Cystic Fibrosis Nutrition Done Right

Cystic Fibrosis Nutrition Done RightBy: Amber Plum 1 | P a g e Cystic Fibrosis Nutrition Done RightThe Story and Diet of Brandon Plum With RecipesWritten by: Amber PlumMother to Brandon PlumAdvocate for CF nutrition, and good health2 | P a g e Chapter 1Introduction Chapter 2 Brandon’s Story Chapter 3A mother’s story Chapter 4Nutrition Chapter 5Working with Texture IssuesChapter 6Conclusion Chapter 7Recipes3 | P a g e Chapter 1IntroductionMy name is Amber Plum, mother to Brandon with Cystic Fibrosis. I am a natural born mother and love every bit of it. Since I was a child I loved healthy food. I hated chocolate up until I had kids. My mom wondered what was wrong with me when I came home with dates not candy like my siblings. I just liked good food. My father was and still is the experimental type, feeding my brother and I eggs with goat cheese at age 6, although I really didn’t like that combo. My father tried many other things too; he was a master sneaker after time went on he had his special pancakes, that we all loved so much. Come to find out they were healthy, very healthy. My father is now in love with flax seed and puts it in everything he can. I guess I learned my passion for making healthy food without it seeming to be too healthy at a young age. I realized if I didn’t eat this way I was bound to show it in my jeans, so I get to look good, feel good and be healthy, this was good for me. I started going to a personal trainer and worked out 3 times a week and this only increased how I felt and looked, as well as increased my health. I found through life whenever I had a period of not following the plan of healthy eating and regular activity, I was not in good shape. I have had to learn all the tricks to make common food that I liked work in my healthy world. Being healthy was and is a very important thing to me and it became important to feed my family healthy too. I know that a person no matter the age with CF being healthy is even more important to them. If someone is destined to get sick and has a weaker system, living on junk will help aid them in being sick. There is one way to push through in this disease and that is to be healthy and compliant. The medical staff at the clinic will be the first to tell you that Body Mass Index (BMI) is very important and that the better the BMI the better the lung function. This is a true statement and you need to take them very serious when they4 | P a g e say this. The thing with BMI is that it doesn’t necessarily mean you need to have extra fat it is a standard height to weight ratio. Weight should be good weight not bad weight, if you build muscle it weighs more than fat and is good for you. I will be honest here in saying that the nutrition advice that I have received has not been up to par with my beliefs. On our first initial visit and introduction to the nutritionist on staff I was told how people with CF are able to load up on butter and McDonalds. I heard a mental shrike sound rather loudly in my head; I was completely mortified at the thought. I really could not believe that this was their best recommendation. As I researched into it more I found it to be very true advice across the board, and the list of food that is given to you just was not that healthy. I get it; I get their thoughts on how this works. A CF’ers body only keeps about half of the nutrients that they take in. If they eat poor nutrition and bad fats it’s just half as bad as it would be for the rest of us, right? This to me is like telling my child that second hand smoke is ok, since they aren’t getting the full affect of the cigarette. Wrong! As many of us know it’s more dangerous. These bad fats aren’t helping; they are hurting, what happens to the non-CF child or adult who eats bad fat? They may acquire diabetes, heart problems, frequent illness, lethargic behaviors, and much, much more. When researching and learning more along with this disease as a loving care giver I have gathered a lot. I notice Brandon does not get lethargic, nor could anyone tell when he has been very sick. He is, as they all say not like a lot of CF’ers, he doesn’t show signs of sickness or seem to be affected by it. Nothing knocks this kid down. The other major comment I get from every one and that goes for doctors, nurses, clinic staff, friends, family, strangers, and anyone who is close enough to Brandon, “Man he is sooo strong!” This little guy has had 3-4 people needed to hold him down before he was a year old if he was unwilling. The strength is outstanding and almost unbelievable. This is what happens on a very healthy, high protein diet. When growing your BMI to where it needs to be, you must consider muscle puts up a fight a lot better than fat. Fat is a quitter and gives into sickness, you always here when someone got sick and claimed it was the best diet they ever went on because they easily lost 5-10 pounds in a week. I hear it all the time and the best part is you lose the fat first. Muscle also has a memory, if you lose a little muscle and then go to regain it, it comes back rather fast. Muscle is a fighter and doesn’t give in as easily. I have noticed with many CF’ers that it’s 5 | P a g e almost impossible to actually get “fat” so it shows me that fat isn’t really helping and their bodies aren’t responding as well to it anyway, but those who work out and eat a high protein diet have extra “weight” and are able to gain muscle mass. They have also shown to be much more healthy and happy.I have become very passionate with my sons diet along with the rest of my family. Brandon has always been more difficult to feed, especially having to be double what a non-CF’er needs. Brandon has also had other road blocks in place, such as a whey allergy and texture issues. Not only have I worked on doubling up what he needs I have focused on good fat and high protein. It made since in the beginning that if they need enzymes for fat, protein and starch then that is their trouble area. I live with Brandon day in and day out and I know him better than anyone. I witness how things affect him whether it’s mild or extreme and no one will tell me any different. I am not a doctor, nutritionist or trainer of any sort. I am a mom who has used a method not mostly used or talked about in the CF world and have had great success. I speak from my experience and from knowledge I have gained through life just living in a healthy way. I believe fully in what works and I see that what I am doing works, and works better than the advice that has been given to me. I was a frustrated parent when I could find no nutritional help with my son’s diagnosis. I made it my mission to figure it out and help others. I have a goal to change how CF eats so I can see my son, my cousin and all others live to their fullest. If the cure that is in research stages proves to work it only will work on the lungs. So we need to focus on a long term goal of good health to carry through past the current median age of 37. If BMI is in direct correlation to good lung function and overall health it only makes sense that healthy BMI serves them the best.Chapter 2Brandon’s Story6 | P a g e When Brandon was first born he was a beautiful little boy and perfect in every way. I was bound and determined to nurse him longer than the 2 weeks I forced myself to with my first born. Brandon was an eater, it was constant and tiring. I realized after the first few initial hours it didn’t slow down but increased tremendously. I didn’t remember my daughter being that hungry but he was a boy and I figured he just really liked to eat. Every kid’s different right? I noticed a lot of other weird things such as every time he ate he most likely had a bowel movement as well; I thought that it was normal for as much as he was eating, where else would it go? I also noticed that he spit up often and he was spitting up milk and mucus, lots of mucus. I was alarmed by the mucus and paged the nurse in to ask if that was normal, she said “I have never seen that before, but he is putting on weight, I wouldn’t worry”. Another nurse mentioned that it could be something he sucked in the birth canal and he just needed to expel it and all should be fine. I took that answer and went about my hourly feedings with him. (Looking back I am amazed and proud of the fight he had in since day one to not give up on drinking the milk he needed although he lost most of it. He managed to gain weight against the odds).I remember I was looking into his eyes and just felt that he was different, I just knew something was going on bigger than I could understand at the time. We finished our stay in the hospital and went home. My father came right away to see his new grandson from out of state. I remember us all sitting and enjoying our time and receiving a call from my family doctors office. The nurse told me that Brandon had two mutations detected for Cystic Fibrosis on his new born screen and that we needed to come in right away so we could get referred to a specialist to confirm these results. I asked her if that meant he had it or not and she told me its hard saying till it’s confirmed with special testing. I was crying with everyone just sitting, with horror on their faces, waiting for me to tell them what just happened. I told them that they think Brandon might have CF. My cousin was born with CF 29 years ago so I was slightly familiar with it but not as familiar as I should have been. I looked up some things on line and noticed at all the sites I went to that they all had a common statement that stuck out. People with CF have two mutated genes, exactly what the nurse said Brandon had. The following day there was a package on the door step from the state which carried the New Born Screening test results. I read it over and over but it read clear as day... Two mutated genes, Delta F508. Now we can all hope, dream and pray for that miracle, but truth of the matter is I knew it then. We had our family doctor appointment and he put it to us bluntly,7 | P a g e it is very likely and mostly definite that he has Cystic Fibrosis. It has to be confirmed with testing but it says it clear as day in the New Born Screening test results, two mutated genes. A person with two mutations HAS cystic fibrosis. There were tears welding up in my husband and I’s eyes and we were given a moment to be alone. The nurse came and wished us luck in the testing and hoped that a miracle would be on our side. We got our referral and had to wait a week to get into the clinic. This period had to be the worst, nothing like being in limbo not knowing what you need to be doing for your child that most likely has this disease; a week seems like an eternity. We made it the week and went in for his appointment. The CF specialist at the clinic examined him and asked a bunch of questions, she was rather shocked to hear I had a relative with CF; usually it is uncommon for more than one family member to have CF, aside from siblings. She continued on and pretty much said that he had CF but there are times that she feels certain that one has CF and they end up not having it, but not to get our hopes up because that will be a miracle in our case, especially with the double Delta F508 mutations already picked up in the New Born Screen. She started him on enzymes and an order for a sweat test. Sure enough, his sweat test came back as having Cystic Fibrosis.We came back in to the clinic to discuss what to do now that we knew Brandon’s results. Percussion and nebulizer treatments were demonstrated, and aside from Brandon’s hatred for them I felt really confident in what I was to do. We had to figure out a system that Brandon would tolerate and I had to learn how not to cry while muscling my infant to do what had to be done. I learned the best method was to do all the major meds at night and would get him out of bed while he slept and all was well as long as he didn’t wake up. Any other time he fought me and we just pushed through. I gained a grand understanding of the importance of doing EVERY treatment; there are no breaks or days off. It’s like brushing your teeth or putting your shoes on, it’s a part of your day, plain and simple. Once you get your method down its time consuming but otherwise rather simple and to the point. Cleaning the nebulizer cups may take a few tries of getting it down, but that too seems to make sense rather early into the game and for those still lost in it, Boil, Boil, and Boil. I did find for the days when we didn’t have many neb cups but were on increased treatments for a cold, I couldn’t keep up with the boiling so a good bottle sanitizer worked great. I used the microwaveable kind and it seemed 8 | P a g e to do a great job. I really didn’t feel comfortable with the dishwasher, unless I was 100% sure it got hot enough and nothing else ran with it, but there’s still the thought of left over gook from the previous load and the stress of it just seemed to be too much. Neb. Cups seemed to clog more often than not and had to be thrown away before it was time to. Boiling has proven to be the simplest, shortest and most affective.I would have to say the hardest thing to understand with Cystic Fibrosis is nutrition. When we first went to the clinic and received a bottle of enzymes I was at a major loss, and I definitely would say they scared me. We started with one capsule opened into applesauce before every bottle. We were also advised to add baby cereal to every bottle. They didn’t really seem to think breast feeding was the best so I needed to supplement with formula and use the cereal with all bottles. I was gifted a great breast pump, but to pump every single feeding started to just not seem to work for Brandon or me. We made the switch to formula and things took a turn for the worst. Brandon was spitting up, throwing up and had the most rotten diarrhea I have ever witnessed, with the raw butt rash to go with. I knew from past experience this meant milk allergy. My mother, my daughter and I all have intolerance to whey (a protein in milk) and I guessed Brandon did too. I learned with my daughter that goat’s milk was the best answer, I tried everything else first with her, soy caused constipation, lactose free still had whey in it, pre- digested still had the whey in it. I was at a loss when a friend of mine recommended goat’s milk. I was really hesitant and fought it, but after trying everything they had I was willing to try anything and wouldn’t you know, it was a God send. I was not going to put Brandon through what my daughter went through so I went straight to goat’s milk. You have to make it special for infants, and I made it extra special for Brandon, you can find out how to make it later in the recipe section in this book.I will tell you; honestly, Brandon’s CF doctor hated the fact that we put Brandon on goat’s milk and made it clear that she didn’t approve. She went on to tell us that soy milk is bad for CF’ers (something to do with the protein itself) and hypoallergenic would do the trick. She asked us to try it. I really stewed on this, what we were doing worked, Brandon liked it and was gaining weight. I did a little more research on goat’s milk. I already knew from previous research that it is the closest thing to mother’s milk than any food, and easier to digest on account of more medium chain fatty acids. Goat’s milk is a complete protein and has every 9 | P a g e essential amino acid needed. It is also higher in vitamin A, calcium and protein than cow’s milk, although it’s lower in fat1.I found several articles on line in my new search of benefits for CF’ers, but this statement was easiest to understand: “Goat's milk contains every amino acid that is essential to the body, making it a fully complete protein. In addition, Goat's milk is loaded with fatty acids--almost three times as much as cow's milk--that are known to help fight certain diseases, such as cystic fibrosis, heart disease and many digestive diseases and problems. In addition, half of lactose intolerant people who cannot drink cow's milk can drink goat's milk with no problems. Finally, goat's milk has the added benefit of being hormone-free, unlike some cow's milk.2” I also knew that it didn’t have mucus in it which seemed to be a positive in my mind. Cow’s milk to me sounds like the worst thing to give a CF’er. I know that I have bad sinuses and on a bad day I have what seems to be a lot of mucus in the back of my throat and it is never fun. If I attempt to have dairy, which I used to try it on and off through my life, it added to the mucus making me feel all junked up and even nauseous, with minimal to no relief. I get gagy and try doing the throat thing to clear it and I am sure I don’t have to go any further on this but we all know it and it’s unpleasant. I then think about Brandon, this is nothing compared to what he has going on and its every day, every minute, every second. Now how can I even complain, what I have going on is miniscule. I for sure wouldn’t dare add to what he has, he has plenty enough mucus and needs not even a drop more. So for us it was goat’s milk, no other option. We returned to the clinic and put it bluntly to the doctor. My husband is defiantly the alpha male type so I let him speak, figuring it would be taken more seriously from him. He told the doctor that we will not change him from goat’s milk, it’s what is working and he sees no point in changing something if it works. He went on to say that Brandon’s weight is not just up but fantastic so unless you find some other reason as to why it is medically necessary to switch him there is no reason to discuss this matter any further. I will say that is the first time I saw his doctor have any respect for us as parents. It had nothing to do with that fact that we all disagreed but everything to do with the fact that we were fighting this fight with our child and committed. It’s a fine line between which parents are and aren’t and sadly enough this doctor has to deal with all types, and her main priority is the 1 http://www.associatedcontent.com/article/136851/compare_the_health_benefits_of_goat.html2 http://www.ehow.com/how-does_4621351_goats-milk-compare-cows-milk.html10 | P a g e child not the parent. Not until we showed her that day that we were “in this” did she give us any credit.I have learned a lot from this whole experience. I am going to veer off here for a minute to discuss my personal opinion of doctors and the medical field. I used to hold doctors and hospitals on this pedestal of all knowing practitioners. Until I got my feet wet. I will tell you that not everyone understands this whole thing with doctors. Some people will completely discredit doctors because they can’t figure out something or they had a bad experience of sorts; a bad doctor and so on. I have heard in my frustrated phone calls that doctors practice medicine because there never really is a right answer, everyone is different, and so they practice on each patient till they figure it out. So this kind of made sense to me, they went to school they are programmed with the facts and the tests and the warning signs and so on. They start out in practice mode and as years go on they learn from experience and get better and better at judging and figuring things out, but that doesn’t mean they are always going to be right. I went to school to become a hairstylist (cosmetology school) I had four weeks in class room before I was put on the floor to start working on people’s hair. For the rest of my schooling I had an hour of classroom, then the rest of my hours were on the floor. I attended Tuesday thru Saturday from 8:30 am to 3:30 pm. I was so afraid for my first hair cut; I couldn’t believe how they just put us out there like that, barely aware of what we needed to do. As time went on it got easier and seemed to be rather rewarding. We had instructors who checked every cut, color, perm, up-do, and so on. I seemed to excel while others seemed to know the technical verbiage really well but didn’t quite have the ability I seemed to have. I will tell you I could not have recited the book as the others did but I understood it and practiced it to perfection most of the time. I was the girl who was assigned to fix what other students messed up. I had the instructors asking me to do their hair. I was great at what I did. After 10 years of practicing hair I have came to a point where I am amazing at hair, but I am a horrible sales person, a horrible business owner and there have defiantly been times where I didn’t do a great job or miss judged a good color for my client’s skin tone or eye color. So to compare a doctor to what I do I understand that they have the knowhow and ability, they know what works with you and as a general rule they know what’s best. Then there are those few people who come in and throw them for a loop, because as we all know God created all people different and 11 | P a g e unique. There is going to be a difference of opinions at times, it’s ok and expected to go toe to toe with your child’s doctor. The key point here is everyone has the best interest of your child in mind. The doctors that specialize in this field are all very passionate and wonderful in their own way. So let them be a part of the team, fight together just remember you’re the captain. Just as you would have an opinion and the final say in what happens to your hair, you have an opinion and final say in what happens to your child.Now that we had our doctor’s respect we felt it would be a little easier to discuss things. This faired to be true for the most part although it never really seemed like they trusted what we did, but they couldn’t say anything because it was working. I always felt like I could be doing more. Even when Brandon was at his best I had to keep researching and reading about everything even remotely related to CF and nutrition in general. I guess it’s like being in a boxing match, you can be on top of your game and gaining good scores, there could be no way you could lose then you take a left hook and lights out. The more you train and learn about moves you may never use the more you are equipped to fight. CF to me is a fight and I want to know every move possible and learn how to best prevent Brandon and our team from losing the fight. Brandon’s weight was always great he was on a roll, and lung function was always 100%. At seven months of age Brandon started coughing, which up to that point there was never a cough unless it was during a treatment. It wasn’t much of a cough but as we were told any extra coughing aside from his normal was not good. I of course called the clinic as I always do anytime I have the slightest concern, that’s what they are there for. I knew they would tell me to start his action plan of increased treatments, which they did, but I wanted to be sure they knew what was going on. The general rule was after starting the action plan if he didn’t have any change or worsened to call back. I personally only give it 24 hours to get better before I call, unless there were prescribed medicines such as antibiotic, and then I gave it three days. Brandon wasn’t getting worse or better, so I called and they had him in to examine him and prescribed him a 20 day dose of amoxicillin for what they felt was a sinus infection. His lungs sounded clear and that was our biggest concern. Within two weeks Brandon developed an odd small red dotted rash across his entire chest and tummy. He seemed irritated but I was unsure of what type of irritation it was. I called the clinic and they decided over the phone that he was most likely allergic to the amoxicillin and they were going to switch him to Cleocin. We were told to re start the 20 day cycle on this new antibiotic. Brandon still kept a little bit of the rash; they had him in and said it wasn’t concerning them as long as he didn’t show signs 12 | P a g e of irritation, which he didn’t seem irritated. Once Brandon stopped the antibiotic the rash went away as well as his cough. Two weeks later the cough came back with a bit of a runny nose. I went into the usual routine; call the clinic, start the action plan, and the action plan didn’t change the cough. Back to the clinic we went and back on the Cleocin for another 20 days, plus allergy testing and an automatic start on Singulair. We mimicked this routine again for a third time and now came up to the fourth time. Brandon’s CF doctor just looked at me and said “ok we have been on this same routine for a while now haven’t we?” I answered “yes” and she said that she didn’t think it would be pseudomonas because he would be wiped out and showing greater signs of sickness, his lungs still sounded ok but were starting to get a little rattle to them. She decided at this point it was wise to just do cultures and check out anything just in case, and wouldn’t you know it he had cultured pseudomonas. We were all rather shocked but went with a different plan and started him on inhaled TOBI and a newer antibiotic named Cipro which is specifically designed to combat pseudomonas, yet only works in 50% of people. I was at least relieved that they found out something and now had a plan more specific towards what was going on and there was hope that he would finally get through this and off the extra medication. After beginning the new medication I noticed Brandon started coughing a lot more and seeming a tad more run down, which is not like him at all. I called the clinic back and they said to give it a few more days, some people just need to adjust to the TOBI. A few days passed and still no change, so they had Brandon in right away. She concluded that Brandon was not responding to the Cipro. Brandon’s CF doctor examined him and was not happy with what was going on and his lungs sounded more junked up. She asked me to head straight up to the hospital and they will be waiting to admit Brandon to start him on intravenous (IV) antibiotics. I did as I was directed calling my husband and my mom on the way to let them know what was going on. I arrived to the hospital and waited for them to get us in. I think I was just in a state of going through the motions; my mom arrived to support me through this process, and of course be there for her grandson. I really didn’t know what was really going on nothing had been explained and no one seemed to have answers, just orders. Finally one of the CF clinic nurses came down to our room and started to explain that Brandon will be getting an IV form of Tobramycin (TOBI) and continue the inhaled TOBI as well. We will increase the half hour CPT to an hour CPT four times a day as well as four times the Albuterol. She advised me to bring Brandon’s vest from home. I started to realize that this wasn’t going to be an in and out kind of thing. I asked our clinic nurse how long exactly would this stay be? She replied with 14 days or at least that’s how long the IV needed to given for, some people get approved 13 | P a g e to go home early if the doctor feels comfortable with them doing the at home care. Brandon, at a certain point, would be given a PICC line (peripherally inserted central catheter) and it is maintainable from home, but usually the first hospitalization she keeps you in the full stay. This was not really what I wanted to hear but whatever is best for Brandon, is what will happen. I called my husband to let him know what was going on and he also didn’t like the news, but it was what it was. I got through the day, after they got Brandon’s IV in and set up for the evening. I had a friend round up Brandon’s SmartVest compressor, vest and tubing from my house and other things needed and she came up. My mom and sister were up for moral support and my husband and daughter came up a little later to spend the evening with us. We made it through the night, Brandon in his oversized hospital crib and I in my broken down cot, but considering it was the only cot I couldn’t complain. Brandon was checked routinely and had several blood draws to make sure he was getting the right amount of medicine. I had no goat’s milk in the hospital so I told them soy would be fine for now, they told me to just order it with room service from the cafeteria. Next thing I know I had Brandon’s CF doctor and the hospital nutritionist in our room and very unhappy with me. I explained first to his doctor that I was having my husband bring some goats milk up and this was what they had for him at the moment, she was fine with this and left. The hospital nutritionist still was displeased about giving him soy milk not soy formula, I told her that is what the nurse staff offered me I assumed since he was 2 weeks from a year old they just put him on whole milk. Then she lectured me about goat’s milk and I told her my stance was firm on it and that was that, she gave an expression with a sigh that suggested disgust and irritation, and off she went and never returned. It got a little harder on day two, Brandon was poked and prodded and checked for anything and everything with throat swabs and whatever else. Every test came back fine but one of the tests checked for how much he was infected by pseudomonas. Turns out it was rather bad and they had colonized his lungs. Brandon’s CF doctor was rather surprised at how high the number was in comparison to how Brandon looked to be fine. Brandon was happy; full of energy just a normal little guy. His lung function was still reading 100%. There were a few times it read 98-99% but the nurses said it would have gone to 100% if they waited for it but they were content with 98-99%. The decision was made to monitor Brandon for a few days and then have a PICC line put in and we could finish our 14 | P a g e care from home. I was very happy with this news; I had hope of getting home a week sooner and also felt proud that the doctor trusted us to do what was needed. She knew what kind of parents we were. By day three Brandon gained a dislike for nurses and was growing tired of being messed with as was I. The good news was the medicine was working, and the following morning they were going to insert the PICC line and keep an eye on it for 24 hours and we would be going home. Things were moving right along, I held out on feeding Brandon so he would be able to be sedated and inserted with the PICC line. The team came up in the morning; they were all specially trained in PICC lines and are very different from IV nurses. I stayed in while they prepped and when the overseeing anesthesiologist arrived I signed consent and was asked to leave. Before I left I explained that Brandon is a fighter and he is very strong, they just kind of laughed like I was cute and said he wouldn’t be able to move once sedated. In most cases I am sure this is true but I don’t think they understood the term “fighter” in the same way that I understood it. A fighter is someone who is strong in many areas and one of them is mental strength. As I waited I had a sick feeling and just knew something wasn’t right. After a half hour I saw the PICC nurses leaving the room and there was some good jabber going on, they were talking about Brandon and I walked up to them and asked them what happened. They looked at me and said he’s a fighter alright, and they certainly weren’t laughing about it then. One of the nurses went further to explain how they had tried 3 times in one arm, a fourth try in the other arm, and finally the head of the department, which happened to be the overseeing anesthesiologist took over and got it in on his first, but Brandon’s fifth try. I grew angry and pushed through to Brandon’s room. That little boy was a trooper and he was just happy to see me, I looked over the damage and it was awful, his right inner arm looked like hamburger meat, and the other arm had the line in it. He seemed like he was distraught and really didn’t want anyone to mess with him, he wanted his mommy and he wanted to be alone. Once we were alone I cried and called my husband to tell him what went on. He was rather upset and did the man thing of silence and radiating heat penetrating through the phone filled with anger and sadness. I went with the, it’s over now and tomorrow we get to come home, so let’s just move on attitude. At least they didn’t have to draw blood by sticking him anymore, it just came directly out of the line and that was that. After several hours it was working fine and they pulled the IV out of his left hand. The poor little guy 15 | P a g e was bruised everywhere but his right hand. That evening my husband was up with a homemade dinner from the church ladies and our daughter. We did this every night to try to maintain some family normalcy, plus Elliauna loved to come and play with her brother and especially in the big playroom they had there in the hospital, which Brandon was able to play in as long as no other kids were in there. Elliauna was running around and Brandon was crawling after her, while my husband chased after him with his pole that held all his meds and connected to his line. We were having a really nice time and then my husband noticed something looked weird on Brandon’s PICC line. We flagged down a nurse from the hallway and she took a look at it and agreed that it did not look right. She asked us to go to his room and they would have someone right up to look at it. The PICC nurses all went home for then night (that’s right no night shift PICC nurses) so they sent the next thing to one, an IV nurse. She checked it over and said it was unraveling she rigged it the best she could and told us that they would have PICC up in the morning to look at it. So the late night shift began and at one in the morning an IV nurse came in to do a blood draw and I told her that the line was unraveling and that I wasn’t sure it was the best idea to draw from it right now. The IV nurse just looked at me, (she was ancient and cranky) she told me she had to do her job and went right to it. She also turned all the lights on so Brandon was highly irritated and she left with her blood draw. I ordered up a bottle of Brandon’s goat’s milk from the nurse and got him out to soothe him down, as I held him I noticed it all seemed a little carefree, normally there were restraints of some tube in the way or trying to trip me, or wrap me up, but there was none of that. I looked down and there was his tube that should be connected to the PICC line hanging out on the floor. I called the nurse back who sent the same IV nurse back up to the room. This woman came in with this look of “OH CRAP” on her face and just said “I had a feeling”, you think? I tried to warn her but she had to do her job. This night became one of the worst nights of my life, I would have rather of been giving birth with no pain medications than to have to experience this. I was responsible for holding Brandon down, I positioned my body facing him and had my arm across his chest and had his hands and did my best to divert his attention to me. There were two IV nurses, the original one I warned and another older woman, so they fumbled around trying to salvage the piece that broke, the line was still in his arm and the connector from the PICC line into the IV tubing was what unwound and snapped. After a few tries at this they discussed a piece that was supposed to fix 16 | P a g e this, so they dug that out of their cart and tried that, which still wasn’t working. One of the ladies thought the piece was too big and ordered up a smaller one, which still didn’t work, at this point everyone was frustrated, Brandon and I were mad, and nothing was improving. Then they did something that pushed me over the edge, they pulled the directions out and read them in front of me and then tried to step by step it with these directions. This still didn’t improve the matter and I shot a look over at them with angry tears rolling down my cheeks. It had been two hours since they started Brandon was hysterical and not going to give up on the fight and I was doing my best not to come unhinged on these women. The woman who caught my look said “I think this is enough, why don’t we just put an IV in for the night and have your doctor come in, in the morning.” I just nodded not thinking any word that came out of my mouth would be pleasant. She went to put the IV in the only spot left, the right hand and I saw her start fishing around in his hand for a vein, I guess my looks became deadly at this point and she backed it out and said, “ok I am not going to try again your doctor can figure out in the morning what she would like to do”, and they left. I called my husband after I had Brandon calmed down, and he was livid, we kind of calmed each other down over the phone and he said he would be up first thing in the morning.Brandon’s doctor came in early and told me that I needed to withhold food again and that they were going to put a central line in that afternoon. Since he had been off his medicine since one in the morning she was getting nervous and wanted to IV him until the central line was inserted. She called her “best” IV nurse in to put another IV in him; although I was not sure where else she was going to get it in. I went to a different room with Brandon and the “best” IV nurse and she did something very smart and I will bank this for future reference, she swaddled him in a sheet so he couldn’t fight as bad. She determined there were no options in his arms hands or wrists, so she debated on the foot or the head. The head seemed to be the best thought since he was crawling and may be interested in pulling it from his foot. She got the IV in without a problem and wrapped his head. Brandon and I went back to the room and within an hour his machine that controls the medicines running through his IV was beeping, and the nurses called the “best” IV nurse back in. the vein blew on his head and she refused to try a second time, she said there was nowhere else she was confident in sticking and she refuses if she is unsure of getting it. At this point I was angered, frustrated and just plain tired of 17 | P a g e everyone messing with my boy. I had the doctor called and asked her in as soon as possible. Brandon’s doctor was in the room right away and I asked her to explain to me why I should let anything else happen to my son, this has turned into torture and I had my mind made up to refuse further treatment unless she could assure me that it was necessary. She said she wouldn’t exactly call it torture and that unfortunately it has been a little rough for Brandon, I asked her to look at his arms and to tell me again that this has not been torture. She did as I asked and looked at his arms. Now this woman is a rock, I have never seen an ounce of emotion on her till this very moment. Her eyes glossed over and they turned to fire. She continued her conversation with me and explained in full detail as to why Brandon needed to stay on his IV. This was our only time to fight this and with hope maybe we could even get rid of it. Either way he needed this since the pseudomonas had colonized his lungs, if we do not continue treatment he will continue to get worse and it will continue to damage his lungs. I believe I already knew this all in my head, but my heart had to be reasoned with. I agreed to continue treatment and asked that from here on out he only gets the best care possible. I also asked the nurse to put us in a larger room, in which they did immediately. I even got a toddler bed for myself! My husband met me prior to the next procedure. The head of the entire department, the same one that inserted the PICC line, was the man doing the central line in Brandon’s groin. It went smooth and Brandon did excellent, they were even willing to let me still take him home after 24 hours, although I was not comfortable after all that happened with going home. Brandon and I eventually came home from the hospital after his very long 14 days and he no longer had the pseudomonas colonizing his lung although we were unable to get rid of them entirely.Many lessons were learned from Brandon’s first hospital stay and don’t let this scare you. This is one of those rare occurrences, worst case scenario kinds of thing. It still doesn’t even qualify for the worst that could happen, but it wasn’t all smooth either. I learned that I am Brandon’s parent I am in charge and no one will make me feel like I don’t have a choice or say. My son deserves the best, I don’t care if people like me, I am not there to make friends, and I am there to make sure my son gets the best care available. When you choose an unconventional nutrition plan in the eyes of doctors and hospitals stick to your guns you know your child and you know what works. You are not going to get into trouble; they are not your 18 | P a g e mom and dad. Alright, they may label you differently but at the end of the hospital stay I had everyone’s respect and they were complimenting the very things that they first didn’t understand. I even had a few nurses come in and ask me about natural things to help their own kids and family members. The staff was delighted by my devotion to my child; I was like a breath of fresh air. I never understood in the beginning but after two weeks I realized that most parents aren’t active in their child’s care and many of them use the hospital as a break from the high demands of their children’s conditions. Although we as parents need breaks and pampering this is not one of those times, your child needs you the most, if you have to work or need to give time somewhere else, like special time for another child, they need people they know and people who love them to be there with them when at all possible. When you are a case of minimal family get creative, church members that know them, school teachers, baby sitters, good friends of the family, other clubs or groups you belong to may have people willing to donate their time to hang with your child. I view it as I need a sitter if I leave the house same applies for the hospital. You will have someone appointed specifically to speak for your child when you are not there; this is not the job of nurses or hospital staff. I will tell you the entire time Brandon was in the hospital his lung functions were always up, his weight dropped ever so slightly and gained back before we left the hospital and he kept climbing in weight thereafter. He continues to impress everyone. Brandon did start showing signs of having a texture issue, but it wasn’t bad enough since he was eating and gaining weight. At 14 months of age Brandon started to walk with the assistance of tables and furniture, at his CF clinic appointment his weight had stayed the same as the previous month, they seemed unhappy about this but didn’t make it a big deal either, they had said they would like to see him gain by his next appointment. . Shortly after Brandon turned one he didn’t seem to want to drink the goat’s milk I went with soy but we all know how Brandon’s CF doctor does not like soy milk, she made her case with me and asked me to try out this formula designed for highly allergic babies I told her I would try it. They wanted to see him in a month to be able to keep an eye on his weight. At his 15 month appointment at the CF clinic Brandon had lost a few ounces, this really concerned his doctor. She asked me why I felt he had lost weight, I explained that he was a full blown walker and had cut in 7 teeth this past month. He didn’t seem too interested in food no matter how hard I tried. He especially 19 | P a g e didn’t like meat and eggs. This was a very unfortunate thing too, considering his milk allergy; it left them with not much else to offer for protein and fat. I was told that he was to for sure gain weight by his next appointment or they would have to talk about a feeding tube for him. My mouth dropped and I was instantly angered. They had referred him into the First Steps program, this is a State aided program In Indiana that is an early intervention program that helps with all sorts of special needs. Brandon’s being texture. On one hand I was excited about this recommendation and also felt like it was a slap in the face. I fully agree that I am not too sure how to work with a texture issue although my mother, my sister and I all have this same issue, but it would be good to know what the professionals do for this. I have been on top of feeding him and I knew for a boy who was picky with many textures and allergic to milk he was doing amazing and was beating all the odds thus far. I researched and found that an average boy at 15 months old should weigh 23 pounds and an average girl should weigh 22 pounds. Brandon weighed 21 pounds, yes not where I want him to be but not enough to be talking about a feeding tube. I felt like we needed to exhaust all other options first. I do get it, and understand if he continues to go down I would consider the feeding tube, but not like this and not under these circumstances. I hit it hard when we got home and pumped up Brandon’s diet. I took Brandon off the formula she thought would be best for him, considering he lost weight and would only drink one cup with lots of chocolate syrup in it. I knew what I was doing and what they have recommended didn’t help matters at all. I went back to the soy and searched other methods. I cut out all juice and water intake (unless it was a hot day); if he was thirsty he got a protein drink of sorts. This is when I started to make his protein shakes found in the recipe section.I was on a mission to prove them wrong once again. I will go in to more detail of how I did it in the nutrition section of this book, but I tell you, I did it. I was putting weight on Brandon, and doing it in a healthy way. We went to our family doctor for Brandon’s 15 month well baby check and discussed what was going on to our family doctor. It had been two weeks from the clinic visit and Brandon weighed 23 pounds, he was looking great according to our family doctor. He explained to me that a feeding tube sounded way out of line to him. He went on to tell me that all children lose weight when they start to walk, their bodies burn more calories than they are used to and it is common to fluctuate and be down a 20 | P a g e little for three to six months. I knew this, at least logically, but it was good to hear from a doctor. I started to think how they could be jumping to such drastic thoughts at the clinic. It was really bothering me, especially that they could give Brandon and I no credit at all and wouldn’t consider his walking to be a factor in the least. I got it, BMI, if BMI is low then its low, it doesn’t matter why. Now I know, and I have worked greatly on keeping it up and being knowledgeable about when he is highly active. I know the importance but there is no margin in this disease. So what about being human? Does this get to happen in this disease? I believe the answer to that question is yes, it happens, so why not factor it in? We will be smart about it of course, I would never allow my child to lose too much weight, but losing a few ounces and being fantastic in every other area is not going to send me to do something so drastic. Yes I will take it serious on the side of increase feeding to make up for the higher calories needed, and had I known to factor in their metabolisms shooting up I would have started an increase sooner. This is one of those areas that I feel they need to have more education on, so to all of you parents with new walkers on your hands or any kind of increase in activity or growth, pump up their diet right away and possibly adjust their enzymes so you are not faced with any lost weight or the talk of a feeding tube for a natural human stage in a child. Brandon and I have been through a lot together and I would have to say it has been a rather trying road. I have learned a lot and figured out what works in a CF body. It makes sense when broken down and seems to be what I feel makes Brandon excel in this disease.Chapter 3A mother’s viewBeing a mother there is a lot that goes on while raising a child with this disease. After having Brandon, I, being a reader and researcher type I looked for any kind of article and self help book, as well as nutrition books for that matter. I was highly frustrated to see that there wasn’t much, and nothing to current. Being21 | P a g e that this is a common disease I would have thought it to be easy to find something informative about nutrition for CF’ers. When it comes down to me personally, I am a happy person generally and a fighter, go getter type so it really takes a lot to knock me down. When I am unsure how I should be feeling I just try not to feel and hold it in until I can make sense of it. I, at first, put my son having CF into that place on hold. I just couldn’t put together an emotion for it. As many of you know there is a lot thrown at you and a lot to learn when you first find out, and a lot of responsibility. Not only am I responsible for my usual wife and mother duties, but I am know a caregiver to my son with a life threatening disease, meaning what I do matters greatly. This is true for sure of non-CF children but not to the same degree. There really is no room for slack; this is a complete lifestyle change in a way that many around you don’t go through. Also to add to that you feel like you can’t make connections to feel more normal by befriending other families in the same position, because CF’ers are not to be around other CF’ers. It becomes easy to want to lock yourself away from the world. I have chatted with other parents on online support groups3all whom have had issues in their own way of coping. I am here to tell you depression was a big one for many parents, which is ok and should be taken seriously. What I was very displeased to hear from some parents is that they let the depression take over to the point that they were not doing the treatments that were needed by their children. While I believe that depression and denial are a big reaction that happens to the most of CF parents, it is still your responsibility to care for your child. Pretending that they are fine is not going to make the disease go away and by neglecting the care that is needed it may cause unnecessary complications for your child. Seek counseling and or talk to your family practitioner about a way to help you cope and work through this depression. It at no point is recommended or acceptable to self medicate or lash out by neglecting your child’s care. You are allowed to be sad, hurt, cry, be angry, be scared, feel at fault, and grieve the loss of life you thought you were entering. Just do so in a healthy manor.I was in an odd state of mind and a rather hard state of mind. The best I could explain it is being in a zombie like state, no emotion, just going through the 3 http://www.cysticfibrosis.com/ http://cff.org/22 | P a g e motions of what was expected. I felt like when I talked to people I was telling them a story that didn’t feel like my own. I remember at the time I had a regular client of mine come in and she asked if I was really this calm about it all, she had been expecting a break down and it never came. Truth of the matter is I may have had issues, but I did remain calm and collected through the whole process, I just internalized my stress (which resulted in fibromyalgia). I was on one of my quest to the health food store, Brandon was about 2-3 months old at this point, and I was going into my story with the lady helping me. I started with “my son has Cystic Fibrosis; I am looking for additional good fat to add to his diet”. She went in to showing me stuff and told me a story of her own, about her granddaughter’s condition and medical battle, who in my mind, would have been ten times harder to cope with than CF. We continued our conversation and she asked me if I knew about the owners of the health food store. I told her I knew nothing and have never met them. She told me that the owners have two sons with CF. I felt the lump in my throat and the tears starting to sting m eyes. I did not want to cry, I pleaded with God “not now, please not now”, but it kicked me and hit me hard. She told me that one of the sons was working right now if it would be helpful to talk to him. This 30 year old man was asked to talk to me and I was breaking down trying my beast to not look like some crazy woman. I couldn’t seem to control the tears as he told me about his lung transplant. I haven’t even thought that far out. He went on to tell me that he had more lung issues while his brother had more pancreatic issues. I believe he felt uncomfortable with me there blubbering away; he looked at me and said he was going to have his dad come talk to me. I think this helped speaking to a parent other than staring my child’s future in the face. Not that this man was at all a horrible display of the disease, he was actually an inspiring display, but all the same it was hard to swallow. When the father and owner of the store came over he told me that “care” (or otherwise being compliant with your care) is the most important thing and should be taken very seriously. He told me the clinic they were going to, which is about 4-5 hours away, he said it was the best in his eyes and what he felt was important to this fight for his children. When I left the store I cried some more and got it all out for the first time. I got rid of that lost feeling and continued on with strength after that. I would have to say it was like a tiny funeral of what you thought your life was going to be, and then a big celebration of your new forming life in front of you. I have always been a firm believer in God and have had a rather rough life. For many years I feared and 23 | P a g e didn’t want to have kids, I just knew my strength, my ability to love, my giving nature and my need to care for the ones I love, there just was no way I could escape having a special needs child. The only way I knew to escape it was to just not have kids, it made sense until my mid twenties, and the clock struck babies and I had the fever. I realized it was time to give up my fear and give in to my faith, either way God knew what I could handle. I married my husband and we got pregnant right away, this was a great blessing to us both, we really wanted to be parents. We had our first child Elliauna and we were in love, I wanted another right away so they could be close in age. I remember thinking I wanted a total of five children, but life changed that. The second pregnancy was a lot harsher and I really started to fight with the thought of being pregnant again, I could adopt if I wanted more right? A week after Brandon’s birth we were notified of the possibility of CF and I already knew it, I felt it in my heart since the first moment I looked in his eyes. I personally went on an emotional roller coaster, filled with a lot of pressure to not mess up, I couldn’t handle if something happened because I wasn’t doing what I needed to do. I was prepared for something to happen and I planned to deal with whatever came when it came and until then I would do all that I could to prevent it. I frequented the doctor often for myself, for many reasons but on one occasion it was fatigue and my family doctor just looked at me and said “I was wondering how long it was going to take you”. I was thinking what does he mean, but then he continued with the facts, “look you have your husband who has disabilities from the Army, you have a little girl almost turning two and you have a baby with cystic fibrosis, you are taking care of all these people, you are a saint, no wonder your tired”. I guess I never looked at that as anything other than what I do, I figured everyone had something, actually I still figure that. I did get on medication for chronic fatigue and anxiety. This helped me push through the first year till I was able to calm down and get a grip on everything. I needed to be put together for everyone, there was no room for me to collapse or break. I never found myself having a great mental issue. I am an optimist so it never hit me that way as I said before I had a rough life; I am normally not too shocked and I am generally prepared for things to be outside the norm. I do have a problem of internalizing things, I take on the, I can do it all attitude and want to be supermom and superwife. I tend to run myself down or start having panic attacks or other things 24 | P a g e manifest as a product of internalizing my stress. After being diagnosed with Fibromyalgia I learned to take breaks, whether it’s going to a coffee shop, library, or even a walk. In the beginning we were attending a larger church which seemed to not have the time or ability to take on my son’s needs which really weren’t that difficult. They were nervous and refused to administer enzymes, which is somewhat understandable, but Brandon wanted a bottle right when the pastor started the sermon. I missed a big part of the sermon and it became rather frustrating. I wanted to try to educate the staff in the nursery and they were too busy to care about my sons needs. I thought maybe I just needed to make the church aware of CF, so I called and asked to talk to someone about possibly planning an awareness benefit at the church. I was rubbed off to someone who told me I needed to write up a formal plan and to present it to another person who could read it over and approve it. I tried to explain that maybe I just needed to speak to the pastor and they assured me that he wasn’t taking things on like this. I still wanted to give my church a try so I emailed one of the head ladies in the church office since it was no longer available to email the pastor. I explained that my family was in desperate need to have the support of our church family, I wrote that we were not in a financial need but just in need of community. There was no response to this email; I was heartbroken at our most desperate time in needing fellowship, they were too busy for us. This is when I met a good friend of mine and she was heartbroken herself to hear of this. She recommended her church, which I knew we needed a church family, but I was afraid to experience what I just experienced. After a few weeks we finally agreed to check it out and we fell in love with this great little family. What we found was a little piece of true fellowship, where everyone loves everyone and it’s a true family. Everyone took on to learning about Brandon’s needs in the nursery and respected things that could affect his health. This is what my husband and I needed, we were broken and down and very low in sprits towards other Christians, but it was then that we were shown the true beauty of Christian love. I know it’s common to turn your back in anger or confusion to God in times like this, but the truth is this is when you need him most.For the fathers involved it’s going to be very different, and you will need to be sensitive to their feeling as well, this is no time to pick a fight. Men are really bad about shutting down and being quite, sometimes it may even seem like they 25 | P a g e don’t care, but trust me they do. I am not saying let them disappear and leave you to do it all but a lot of men were never really made to cope in an outwardly emotional way. The best thing you can do is feed them the knowledge you gain. Let them know how you feel, but don’t point and poke at them to open to you, they will when they are ready. I found out at a certain point it was hard for my husband to talk about this to me because he knows how much it hurts me. Yes it hurts him too, but he feels like he is the man, and he has to keep it together and be that strength. After times of slowly talking about this together he realized more where I was coming from and it got easier to talk to me. I remember we were watching a TV show that brought CF up very briefly, but it was mentioned, it was like one of those sneak attacks and we both choked up and I started to cry, my husband took me in his arms and had the first impulse to comfort me and make me feel better, he dropped his own feelings to make sure mine were taken care of. I then understood that he is the “Man”, the Alpha male, he leads and protects his pack at all cost. He is driven by this and then it made even more sense, what happens when you feel like you can’t protect your pack. What happens when one of your pack members has a life threatening disease that you can’t control? I assume that you then feel out of control. You feel inadequate and you feel at fault. This is a lot to soak in and deal with; he had to give up that control that he thought he had. He had to be at the mercy of the disease. He had to find out a new way to lead the pack and re route. It’s confusing to know where to re route to when everything is so finicky. It gets frustrating and scary. See we as women are programmed to be care givers and we have a completely different road to the same outcome. I believe once both of you get to the end of the emotional road you meet and kind of hash out the new way of things and then life moves on. You just have to find yourselves again here in this new spot. I kind of think about finding out your child has CF like: your husband went to the store to get ice cream. You were pumped up for ice cream; you have all your thoughts and excitement dancing in your head and wonder what kind he will show up with. He walks in the door and he has a box of brownie mix in his hands. You were expecting ice cream and you were not prepared to read the directions and get out all the things needed for theses brownies. You talk yourself off your favorite comfy chair and you get out your mixing bowl and get to work. You put the time into it although you find yourself feeling let down. On top of it your husband just 26 | P a g e stands there watching you. He is unsure really how to make brownies, so he is observing for the purpose of learning. You put the brownies in the oven and you wait the time it takes and you pull them out. The aroma hits your nose and you start to perk up. Next thing you know you and your husband are digging into the brownies and they were great, perfect, just what you needed. There is nothing wrong with brownies they just weren’t what you were expecting, but it turned out to be exactly what you wanted. I admit you never expect to have a child with any sort of special needs you get pregnant and plan for that ice cream. When you end up having brownies instead they end up being better than ice cream, they teach you and you love them and they are perfect. I would never ever trade my son, he may have Cystic Fibrosis, but it’s not what has him. He is a normal amazing little guy who makes me laugh and has a smile that lights up the room. He is my son and that is what matters to me. There are a lot of things going on as a mother or father of a CF child and it is your job to head up your team to fight. If there are siblings involved you also need to maintain the relationship and support your non CF child/children. I believe this has been the hardest area for me. Elliauna is 20 months older than her brother; she grew jealous no matter how hard we tried to make her feel special too. Once her communication was a little better she expressed that she was sick and needed to go to the doctor rather often. She couldn’t grasp that Brandon’s sick with a disease, she didn’t know what the word disease was, nor did we feel like it could be fully explained. I tried to let her become a part of Brandon’s treatment, but then she too wanted to have a treatment, and trying to pretend a treatment was not going to fly with her. I tried giving her, her own nebulizer cup; let her try on the vest when Brandon got his vest. Nothing seemed to change the fact that she wanted to be sick too. She wanted to be special in the same way as her brother, and as much as I tried to explain to her she didn’t understand what Brandon has isn’t something she wants to have. I instituted just Elliauna and mommy or Elliauna and daddy days which were mildly helpful, but only seemed to help in the moment. When Brandon grew out of baby food and started to have texture issues and wouldn’t eat much, she too chose not to eat, if Brandon didn’t have to neither did she, (now she of course ate just not at our wish or with sitting down to dinner). I grew very frustrated, now I was fighting with two kids to eat. I believe this is when it hit me; she was in this stage of wanting to be a “big kid” and the whole potty training stage27 | P a g e where this “big kid” theory is in the potty videos and books. I sat down close to Elliauna and told her that Brandon needs to learn how to eat he is still young, he needs his big sister to teach him how. She took it and ran with it she liked to be the “big kid” who teaches her brother how to do things. She will now come and try to hold his hand or cuddle with us during treatment time to be there for him. I also asked her to take a big breath, and I demonstrated what a big breath was. She took her big breath feeling accomplished and then I told her “Bubba can’t take a breath like that he has to take these medicines to be able to breath”. We go over it often but she gets it now, “her Bubba can’t breathe like her and he has to take medicine to eat and do treatments”. She sees how Brandon has to sit there through the treatment and he doesn’t seem to be having fun, maybe this isn’t what she wants now. Now from time to time she claims she is sick or needs medicine or wants to see a doctor, but it’s more of a common communication she hears a lot, everyone in our house takes medicine and she sees that, so she takes vitamins and she is satisfied. She gets lip gloss or Chap Stick for her lips and so on; things that make her feel like she has something special that she needs.Yes this is going to be trying for a parent of a CF child no matter your condition, everyone will experience it a little different, but all in all it will be a completely different road than first expected. I hope and pray you don’t give up till you find what works for your family and your CF child. It is worth every second of it. Find your stress relief and take time to do it. Although I have mentioned previously about some of my favorite places to go and get away to, I also find for me a good book helps because I don’t have to go anywhere to read, just go to the story in my head. Find a fun book not always educational, self help books. You are going to go through a lot and it will continue through the rest of your life so get used to it. You will be living with this as a part of your family forever, so set the tone now and make the rules and life changes. For example, my husband and I loved to have bon fires; it was what we did every week most months of the year as a social thing. We put our daughter to bed and let our friends lay their kids down or the older kids could stay up and enjoy as well. It was a way we could all get together without needing baby sitters. This had to end; it is unacceptable for Brandon’s health. I know it sounds extreme but it wasn’t practical when he was an infant if he woke up. It would possibly work for a year maybe two of putting him to bed before the fire started, but then it would become unfair to him because he 28 | P a g e wouldn’t be able to come out and enjoy. We quit going anywhere with smokers, period, anything that could be harmful to Brandon’s disease we took out of our life. We are lucky now that things are becoming non-smoking in public facilities in most states. The best way to support your child is to change your life too. Now that’s not to say if you have a sitter for all kids that you can’t go somewhere that may be smoky, but shower and change before picking them up or leave them over night. You need to be responsible first. We ended up losing most of our smoker friends over this, but my son is more important. Our true friends that cared either ended up quitting or would respect the smoking rules of being around our family. We had an unfortunate incident with family members not taking us serious in the beginning but we stood our ground we had to be unpleasant and it was heartbreaking to us, but once again our son came first. People do end up getting it. Trust me loved ones will generally get with the program and take you serious if you show them they have to. Some of the things that happened over time with putting our foot down haven’t fully smoothed over, I hope someday they will, but I don’t let that get me down. I am appointed to care for my children and my family, I am not in charge of anyone else or the choices they make. We do miss out on a lot of things that we would like to be a part of, but you can’t expect everyone to completely change how they live, you can only expect them to respect your rules and boundaries.I will end this chapter with some things that other people said to me that seemed to make me feel better at times. There was a complete stranger who was a mother of a girl with CF, she reached out to me and I asked her a few questions, as we were about to hang up she said “just remember this isn’t a death sentence”. I sat there for a minute to soak that in and by golly she was right, not a death sentence at all. You can either fight or wait to die, and these days that may be a very long time, as we know I am a fighter and plan on raising my children to be fighters. The second greatest thing that warmed my heart was from my grandmother, she told me that God chose me to take care of a special child, which in turn makes me rather special too. I guess this is very true I felt it in my heart way before it ever happened. God made me and prepared me for this. It’s not a burden (which some may view it as), but an honor that God trusts me enough to have a child like mine. God equips us, fully for what we have happen in our lives. We all have a purpose and it makes no sense while we are here, but it’s very important. We can spend our29 | P a g e lives worrying about all the things we can’t change, or we can chose to enjoy the time we have. Chapter 4NutritionWhen it came to nutrition I was usually up and down from feeling confident to feeling very frustrated. In this chapter I will explain more in detail about the things I found and learned by observing the effects on Brandon. I believe in the benefits that have shown to be true for him. It seemed like the clinic didn’t have many answers. I believe that Brandon’s whey/milk allergy (which was confirmed by testing) was throwing everyone for a loop. I have lived with it and dealt with it, with myself and my daughter, but not at all in the way of CF, to add to the frustration I personally disagreed with their nutritional advice. The very thought of being told to give your child a bunch of fattening junk made me just sick to my stomach. Like stated in chapter one I had a whole different view of body mass index (BMI) than the clinic. I went a different way with Brandon and at every step of the way I have been looked at oddly by them. I know they have been biting their tongues since the moment Brandon became a patient when it came to nutrition. The truth of the matter is they have tried to prove me wrong but it hasn’t worked in their favor. After we put our foot down with the goat’s milk his CF doctor became concerned with his levels and tested him for everything possible. The test came back perfect with a very slight low in iron. Ok add a little iron to his diet is what that told me. It was nothing that was major or a big concern, and could happen to any child on cow’s milk as well. Brandon was gaining great amounts of weight and impressing the clinic. To add to it every time he was in his lung function was 100%; he felt good and looked good. I found I was still struggling with understanding the enzymes fully and asked them if he was on the correct dose. The30 | P a g e response I got from this was he was already on the highest dose for age and weight. Brandon still had that stringy greasy look to his bowl movements but not horrible. We noticed he was gaining weight great so not a big concern, right? Being me and who I am nothing is good till it’s perfect. I started my calls when I got home. First to our family pharmacist and friend, I asked him to fully explain what he knew of the enzymes. He checked on it for me and said that he was on the right dose for age and weight, and he wouldn’t advise me to give any more. I asked about the time frame. I am not sure if this is different with each company or a general rule and I do advise you to talk to your doctor or pharmacist before following what I learned. Brandon was taking Creon 1200 and his enzymes would have a life of 2 hours. As my friend explained to me, just because it’s in your stomach for 2 hours doesn’t mean they are good for 2 hours. If you give your child the enzymes and then go to offer them their bottle or food and they aren’t hungry you could safely say they are good for that full feeding up to the first hour. If your child takes that first feeding and then wants a small snack up to an hour and a half of that feeding you should be ok. If your child takes the full feeding then wants another full feeding an hour later you need to give more enzymes. The longer they are in their stomachs the weaker they get because the stomach acid starts breaking them down and they are completely dead at that 2 hour mark. So as a general rule we claimed enzymes were good for an hour I didn’t want to push although there have been time I have pushed it further, like trying to give a bottle before you leave the house to go to dinner and they refuse. Then you get to the restaurant and they decided they wanted the bottle at the hour and fifteen mark. Or he started being picky and finicky and I was unsure if he would eat enough to need the enzymes and would wait till I saw how much he ate, if it was little I let it slide from the previous enzyme dose an hour and a half prior, if it became a good amount I would then re- up on them.Ok I had the timing down but still was unsure of the amount and although the doctor and pharmacist said he was at the max I just didn’t think it was right for him. I logged back on to the good old computer and went to my favorite source of input, support sites. I had several I was a part of and went and asked about enzymes and everyone’s response was you need to find what works. What did that mean I still wondered? I looked up the drug company’s site and found no good info. I was ready to scream, or cry, but neither, I knew, would help. I had one other31 | P a g e source that I hadn’t talked to yet but was well on my way to what was going to turn into a great phone call. My Aunt Jill (mother to 29 year old Rachel with CF) was the only one who would be blunt with true experience. I explained that Brandon was on the “highest dose” and she put it to me like this: the highest dose isn’t really an exact number it’s more like a recommendation. She said “play with it, you’ll know” everyone is so different with this disease and whatever works is what is right for each individual. Rachel still has to play around with her enzymes as will any CF’er, it is an art! The one thing I do know is it has to do with fat, protein, and starch the higher the amount the more enzymes. For Brandon he has always sat on the edge of the highest dose. This means if he had an average fat and or protein meal he would take that prescribed dose. If Brandon were to have a high protein and or fat meal it would need to be increased. I have learned not to fail at putting extra fat and or protein into everything possible which generally meant he needed the higher than prescribed dose. This is where booster food with natural enzymes helps as well and will be explained further in this chapter. This is all relatively easy till you start working with solids. I finally understood as all others do at some point, there is no right answer. I had the support and information, but truly I was on my own. I was and am the only one who knows Brandon well enough to determine what works best for him. When you are figuring out whether the enzymes are correct the only answer and clue you have is in their poop. Get used to poop, go ahead and get your badge for poop specialist because this is the one and only way you’re going to get any answers. If you are new to this specialty what you need to know is when the poop is extremely foul with fat deposits there are not enough enzymes. It will look stringy, greasy and or runny, I have heard so many different explanations but if you’re unsure or this is your first child and don’t know what to expect in baby poop just ask and as silly as it sound offer to change your friends babies when they poop so you can see what “normal” is. If you are breast feeding a normal poop will look seedy like small raspberry seed in the poop. If you are formula feeding it will be smooth unformed and gradually become softly formed yet still smooth. With a CF child you will notice a major difference to none depending on how much their pancreas is affected. With a highly affected child you will notice the odor, on top of the fat deposits there will be a discolored in a splotch pattern from light to dark and will 32 | P a g e look shinny where its darker which is the fat deposit. You can also be on the lookout for the stringy poop this shows up in more of the loose stool and is self explanatory, although this usually doesn’t have different color just a rather notably different texture throughout. Now what if you notice this and feel like it’s time to up the enzymes, go for it, with caution. It’s never a bad idea to communicate with your doctor about doing so. Start small, we added a fourth of his usual prescribed amount in the beginning. You most likely will see in the next bowel movement whether it was affective or not, if there was no change or not enough change try adding more. As a general rule I never changed a dose more than one time a day until I got to understand it better. The thing that you must be MOST careful about is too many enzymes. Too many are a bad thing and not fun. Too many will lead to hard and possibly compacted poop, this may result in pain and even a hospital visit if not watched carefully. Don’t let this turn you off from figuring out just pay attention to everything going on, if needed chart so you can follow it very closely. Whatever you end up figuring out let your CF clinic know what you have changed it to, either by a phone call or at the next visit. It is very important to be up front and honest with the CF clinic. Brandon had several issues in this department and I believe I was promoted to poop expert at one point! I remember when I was in middle school I had a science teacher who had a huge science lesson on “Why some poopy sinks, and some poopy floats”, who would have thought that lesson was to prepare me in my sons pancreatic insufficiency. A great a fail proof method is to see if poop sinks or floats, in simple terms there is a gas released causing the poop to float, when there is many floating poops it is a for sure sign of malabsorption. When in doubt to the floating test! This was true of Brandon’s stools. I was on a mission and had increased Brandon’s enzymes and had reported so to the clinic, which they had calculated for weight and age and said this was fine. The following month I had increased his enzymes again, so he was up to 6 pills, or 6000 lipase, when calculated he should only be 2500-3000 lipase. This caused a big discussion between the CF doctor, clinic nurse, and pharmacist, as if I wasn’t in the room. It was decided that the brand he was on was not best suited for him, and they switched brands to a newer enzyme brand by the name of Zenpep, which he has done great on, and no longer has the constant hard bloated belly. Each type of food you feed your child will start with the prescribed dose. You will need to determine if it has fat and or protein in it as well as carbohydrates. Once you determine what’s in the food then you must determine how much of what is in 33 | P a g e the food. Once again keeping a general log of food and affect is going to be helpful. Start with the common knowledge that most fruits and vegetables need no enzymes, although you will want to find ways to add fat and protein to anything you can in a healthy way. As if there isn’t enough to do if at all possible it is wise to make your own baby food since your baby needs to eat differently. I had a few jar foods I would feed him and I had several recipes I concocted on my own. On the top of all the food whether jar or frozen cubes of homemade goods, once I figured out what amount of enzyme was needed I just wrote it on the top of the food. This way my husband knew, or when packing for a night at grandma’s she knew and I didn’t always have to be the one to feed him or in the beginning refer to charting to know how much to give for what. Although, after time it stores to memory rather well, then it’s time to change again. Once you are off baby food you will need to go through the process all over again with enzymes and once again don’t be afraid to write on any package of food the amount needed. I headed to our local Health Food Store and asked one of the employees that worked in the vitamin/supplement area about good fats to add to Brandon’s diet. She recommended Hemp Seed Nut which is the only natural source of omega 3 and omega 6 in the proper ratio to work correctly in your body. When I researched hemp seed nut I found that it is the closest complete protein next to meat, milk and eggs4. It was also said that hemp seed nut consists of 33% protein and 44% fat with 39% being unsaturated fat. I decided to add this to Brandon’s daily diet, more good fat and protein can’t hurt, plus it grinds down really nice in milk or water to boost any beverage with a slight nutty flavor. I called the manufacturer of the hemp seed nuts and asked the recommended amount to take and they told me it is one tablespoon per 50 pounds. Now I know you are having the same thought, what if my child has a nut allergy? Hemp seed nut is a fruit, not a nut and has no reported issues of anaphylaxis or allergic reactions in those with or without nut allergies. You need to double recommendations not already doubled for CF’ers. I also learned from the health food store that acidophilus is highly recommended for all people especially those more at risk to become sick. Acidophilus is a live bacteria that when added to your body will go in and eat all the bad bacteria. This had proven to be great for immunity; it is now recommended by many doctors after an 4 Nutritional Profile and Benefits of Hemp Seed, Nut and Oil by Gero Leson34 | P a g e antibiotic to restore good bacteria after it is all striped, as well as during, especially if there is diarrhea. I firmly believe in Acidophilus and the whole family takes it daily to help us fight off things that may come in contact with us. It’s also good to fight off yeast in the system, Brandon used to get oral thrush quite often until this was added to his daily arsenal. Acidophilus is gaining a lot of press lately as you may have seen. Yogurt is one of the power foods that have it in it, although it may be hard to eat yogurt every day, or like Brandon you may be dealing with a milk allergy or intolerance of some sort. At any health food store you will find a large variety of Acidophilus including vegetable based ones which for milk allergy/intolerance will be perfect. You may want to ask for help because there are a lot of kinds; you want to find something with the highest amount of microorganisms. Since CF requires higher food intake this goes for supplements and vitamins too. When seeking things you wish to supplement infants to age six with CF should use half the adult dose. Children age’s six to twelve should take the adult dose. Teenagers from age twelve to seventeen should take one and a half the recommended adult dose, and adults should take double the recommended adult dose. This is not the same for medications as it is for supplements so be sure to follow the recommended dose unless otherwise directed by your doctor.I found myself in and out of the health food store there are two women who Work in the supplement/vitamin section they have both been very good at giving me great information and leading me to things to add to Brandon’s diet. My next great discovery was a product by the name Caricol5 which is a puree of not yet ripened papaya, which is a strong source of natural enzymes. They come in small plastic tubes, like mini on the go yogurt, which was great for travel, or to throw in your purse or diaper bag. We found a very small clip to close it and reused to tube throughout the day but you want to use one full tube a day. With further research I found out that papaya has the ability to get rid of mucus from the body as well as pack a good punch of immunity6. We switched on and off with applesauce for giving enzymes. For those who can already swallow pills just take a tube a day or use it in a smoothie, you may also benefit from several brands that make chewable 5 http://www.caricol.com/6 Superfoods For Healthy Kids, by Lucy Burney35 | P a g e papaya based enzymes and or ant-acids. It is extremely important to use natural enzymes along with your prescribed enzymes which will be fully explained next.At three months old Brandon’s CF doctor told us to start solids which is common in CF. I guess it makes sense because they are already getting supplemental enzymes so the concern of their bodies being able to digest it is out the window. I was one of those over achiever moms and was determined to make all Brandon’s food, I wished I had done this for my daughter, but felt it was even more crucial for Brandon’s diet. I started searching on the internet for baby food recipes and how-to’s. I found some really good sites and most of them had the same information and recipes, but there was one recipe that I found that would work for Brandon, it was called Banana’Cado7. I started with their basic recipe and as time went on I modified this as well which you will find my version and all other recipes I have developed specifically for CF babies. I started seeing a major difference in Brandon’s poop when he ate foods with natural enzymes, bananas, avocados, papaya, pineapple and mango. The difference was good, and amazingly good. Brandon felt better eating these foods so much that he would rarely eat anything else. I let him eat what he liked as long as his numbers were good and it seemed to make him internally happy too. Now I completely recommend CF’ers eating a natural enzyme food frequently, it should not replace the prescribed enzymes. Rather they should be used as boosters. The reason why is, your prescribed enzymes only cover the three most important enzymes, lipase, amylase, and protese. Lipase is the enzyme responsible for breaking down /digesting most all the fat your body takes in. We also have amylase that is responsible for breaking down most of the starch, and the proteases along with other helpers to break down protein. Our bodies are amazing and do have a back up to digest starch and protein, but unfortunately it isn’t all digested. The saddest part is there is no back up for lipase one of the most important things our bodies need. Papayas specifically, have a natural enzyme called papain that has the ability to break down protein. I use papaya for it is seems to be the best form of natural enzymes when extracted before it ripens, and has the ability to calm down an acidic stomach too. It is best and recommended to give this along with the prescribed enzymes to help complete the process of breaking down the protein in which the prescribed enzyme7 http://www.wholesomebabyfood.com/36 | P a g e does not fully help with. In your body there are several smaller protein digesters and the protease does not do it all alone. All the foods with natural enzymes have the ability to aid in digestion, so feel free to eat plenty of the yummy natural enzyme food.Fruits and vegetables are good for CF’ers and should be given a lot. It is the one thing that their body can process on its own. Raw is the best way to eat fruits and veggies and are a great source of vitamins and minerals needed for growth and overall good health. Nuts and seeds are equally important at the proper age. All nuts and seeds have a good fat base and a healthy fat base at that; you will need enzymes to help aid in processing these good fats. Some findings may even say that fruits and veggies should be 75% of a CF’ers diet8 the biggest thing to remember is that CF’ers need 50% more nutrients than a non CF’er. A high geranium diet is very good as well so pump up the garlic, onion and shiitake mushroom. For better words these three food items have anti bacterial properties, shiitake is a superstar food; it contains lentinan which is solely responsible in preventing disease and boosting immunity. Lentinan has been used to prevent viruses from reproducing and fights off infection. Lentinan has been approved as an official anti cancer drug in Japan since 1985. They have also seen it to be helpful in the fight against AIDS9I have learned a lot from experience and the biggest thing I learned is there is no room for pointless feeding and drinking. I always had a distorted view of needing to have water or juice. After a series of complaints to the clinic about Brandon’s poop just not doing good, I was advised to take him off juice unless I juiced it myself. His CF doctor said there is no need for juice. I kind of felt like this was becoming more and more unfair for Brandon. I tried the juicer and it worked but it wasn’t real favorable for Brandon, so he drank milk and more milk. Brandon started to migrate to filler foods, without even realizing it at first. He also stopped drinking goat’s milk and I was left with no other option than to give him soy milk. Brandon’s poop was still off and this is when the CF doctor told me it was the soy, and that I should not give him water, or let him dangle upside down when playing, or use a walker, or hold him around his waist, and so on… What can my child do? 8 Prescription for Nutritional Healing, Phyllis A. Balch,CNC, James F. Balch, M.D.9 Superfoods For Healthy Kids, by Lucy Burney37 | P a g e I tried a hypoallergenic formula that was recommended by their nutritionist. I bought into it and tried it. This is about the point where he didn’t gain weight and they said they didn’t like that. I was still trying this formula, but Brandon did not really like it. He maybe had one to two cups a day with a ton of chocolate syrup, it was the only way he would drink it. I felt maybe this would help him dig into more solids. At the next clinic visit he lost a few ounces. They really let me have it and gave me the sob face and said he had to gain weight by his next appointment or they would talk about a feeding tube. As we all know by now that wasn’t going to fly with me. I tried their way and it didn’t work. I was done and I mean done with their milk theories. The nutritionist came in and really had no answer as to how to put weight on him, really! She had one thing that was a shot in the dark. Brandon loves grits, I make sure to butter them and sweeten with some honey, so the nutritionist gave me samples of egg white protein, and I figured it was worth a try. I went home and went to work. First I ventured out to the good old Health Food Store I looked at all their protein powders and one of the ladies helped me find the highest amount of protein in a shake they had, she walked away and I looked up at one can I hadn’t looked at yet and it was a sport version of soy protein powder, in chocolate. It was the highest by far so I bought it. I figure the whole soy protein thing is something the doctor will just have to deal with. I started adding this to soy milk, and then once a day I made Brandon’s ultimate protein shake. I put the protein powder, soy milk, avocado, banana, hemp seed nut, and shiitake mushroom all together and blended it. This was loved by Brandon and was and still is a daily staple. I was asked to try lactaid milk, they thought he would have out grown his allergy, but that’s not how this works and I already knew that if the ice cream I tried a few weeks ago bothered him, so would lactaid he isn’t lactose intolerant, he is allergic to whey. I let them have their way once already and I am sure Brandon didn’t like it because it wasn’t right for him. I also figured all this time of trying to figure what was going on with his poop; he ended up just needing his enzymes changed. He has been putting on weight and the poop is normal. Now to me that sounds like the first place to check, but who am I? I guess in theory Brandon was on his highest dose so there is no more they can do but he needed two thirds more than the prescribed amount, meanin what he was on wasn’t right for him. I will tell you though the egg white protein turned out to be a great recommendation. It was easy to slip in many foods especially those that could easily become pointless to his diet, like macaroni and cheese, always homemade. Now I know if Brandon has 38 | P a g e a milk allergy how can he have cheese? Here is the answer, whey is the other protein in milk, and it is the liquid part, where lactose is the curd. Whey protein, when heated, dies off, this is one of the major reasons I know that it’s a whey allergy not lactose. The unfortunate thing with whey is that it has been put into powder form and used in a lot of things. Now I know that it is a rarer allergy, but it made me aware of how difficult any allergy would be with a CF diet. Unfortunately most allergies that are common are a form of protein. I plan to use many things that aren’t common allergens. There will be some things that have allergens in but I will offer alternative options for several different allergens too. If you have a CF child with no allergens, then this is still very helpful, and there are recipes for you too.First things first let’s understand food in general. Processed foods aren’t good, but they are especially bad for CF’ers. When a processed food is cooked it causes extra mucus to form. We for sure want to stay away from anything that adds to the mucus. Your clinic and nutritionist will agree to this fact and advice greatly against processed food. Dairy, sugar and white flour also fall into this category. It doesn’t make sense to me but they don’t advise against these foods. One thing I want all parents to factor in is cow’s milk isn’t good for most people and mostly isn’t good for CF. If your child is experiencing diarrhea, or other severe bowl issues, lots of vomiting, spitting up and upset stomach then it is very likely that there is at least an intolerance to milk. If you test for allergies and it comes back fine it’s not always true that it’s ok. Allergies and intolerances are not the same thing. Even if you find there are no issues with milk it will still increase the amount of mucus in the body. Many people might even go as far to debate that milk is not necessary to have after weaned from the breast and that other countries do not drink cow’s milk at all. If you are going to have milk in the diet you may be better off with goat’s milk or soy milk. Outside of the medical community many people will eliminate cow’s milk from ones diet as a good place to start for any and all bowl related issues.Good fats to add to foods are walnut, cashews, palm kernel oil, hemp seed nut, and cod liver oil. My two favorites are hemp seed nut and cod liver oil. I know I have talked about hemp seed nut and the benefits, but it is one of the top staples in Brandon’s diet. Cod liver oil is similar in benefits as fish oil which is commonly 39 | P a g e known for the omega 3, DHA, and EPA, but it is higher in vitamin A and vitamin D10 cod liver oil is all around good for not just CF’ers but all people and many different conditions. I recommend replacing your basic fish oil to cod liver oil. Cooking with oils is really good, but make sure to be extra careful to follow the instructions, many of them have certain temperatures that are too hot for them and also may need to be refrigerated. Try to stay away from lard, butter and vegetable oil to cook with. Get creative or go for olive oil. Second salt is a very important factor to a CF diet, add it where you can. People with CF have a higher amount of salt lost in their system and this is why they taste like salt when sweating, and therefore a result being the sweat test. It makes sense that they need more salt, the hotter the day the more salt. If your child is on hypertonic saline this may no longer be an extreme concern, but by no means should you shy away from it. It is important to be hydrated, which is a hard and confusing subject to much water is a filler, not enough in the heat is going to cause dehydration. When you can, you can add protein to water but just don’t do too much water or juice alone. This brings me to water. Water is a dangerous thing at times. No one really went over this with me but it always made sense in a common knowledge way for me. I have always been weird about water and tap water is filled with bacteria and gross stuff, no way have I wanted my child drinking it. A CF child should really steer away from tap water. There are many ways around this and it depends on your budget. You can get water bottles that add up after time, you can get a water cooler which would be good, or you can go to a reverse osmosis (RO) system that filters your tap water straight from your sink. For those of you really watching your pennies you can boil your tap water and use it that way. Anything that isn’t cooked needs to have pure clean water in it. Some of the filtration systems on your sink aren’t great. They are ok, but not good at the tiny bacteria; this is where the RO system works out the best. You can get an RO many different ways, whether you rent it, or buy it from a water supplier or from your home improvement store.As if there isn’t enough to factor in especially after reading this chapter there is one more thing I wish to cover. Wheat or Gluten in a CF diet is not good; those with CF are at a higher risk of having Coeliac disease or wheat intolerant. Once I 10 http://en.wikipedia.org/wiki/Cod_liver_oil40 | P a g e researched this topic further it made sense as to why this would be bad for most people especially in CF. Wheat is really hard to digest, and in all people, gluten causes a sandpaper affect rubbing down all the villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.11 Some people may not be affected majorly in this area, but it makes sense for a CF’er to do poorly on a gluten diet because there are already enough issues. When someone’s system is already compromised a small thing easily becomes a big thing. Being highly sensitive to the effects of food means you need to take more precaution to the food you eat and the effects it may be causing. Not all people with CF are going to have an issue with gluten but they are more susceptible to having issues and the symptoms are so close to typical CF symptoms that the only way to know if it is beneficial is to try it out, and give it a good three months so the body has time to heal if there has been significant damage.I know this is a lot of information and will be a lot of work, I recommend picking an area you feel most important to you child, like added protein and begin there. Slowly add things in order of importance to your child’s needs. Don’t let it overwhelm you. I started out with a notebook of Brandon’s nutrition I started in an area and documented what worked and what didn’t. For you it would be easy to make a list in the order of which you want to change their/your diet. Write out the things you need to do to accomplish the first goal and work on that and then move to the next item once you are feeling good in the first area. I am a notebook queen and have one for everything, I even have a notebook of all Brandon’s medicines, treatments and so forth, how to and how much, just in case I am not around and someone is unsure of what needs to be done. The point is taking your time and getting to work on the things that matter to you. I fully believe that you will find a lot of success if you really follow many of these recommendations. I am amazed daily at the success in Brandon and others following a healthy life style in this disease. I am mostly proud of the fact that Brandon’s BMI is always good and not from fat, therefore when he has been sick it has not dropped his weight other than a few ounces of water weight that is easily gained back. It is very true that muscle fights and fat quits! 11 http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/41 | P a g e Chapter 5 Working with Texture IssuesOn top of all the other obstacles we have faced Brandon also has a texture problem resulting a harder feeding time. There were things I figured out on my own and things that were beyond my abilities. While lurking on the support group boards I noticed it seemed to be a common thing among CF’ers. One day my mom came to me and asked if I could write down Brandon’s Ultimate Protein Shake recipe down for her to give one of the regular shoppers in her store. She knew I wasn’t finished with the book yet and this woman has 2 grand children (twins) with CF and they too have texture issues. This is when I thought it was something I really wanted to address and figure out. You know me, no stone unturned. In my own world it had always come up that Brandon most likely had these issues and it seemed like no big deal to me, I have always had texture issues myself. It came across as really picky in the beginning, certain cereals in his bottle, no cereal in his bottle, not the right consistency. We figured out what he liked and we went with it. I figure if he liked it, continued to like it and was gaining and healthy why change it. When I started making baby food for Brandon I felt like a failure because he really wouldn’t eat most of it. There were a few choice things he would eat and luckily they happened to be the things I mostly wanted him to eat. The clinic on the other had had other ideas of what they would like to see him eat. I went with my same theory and continued feeding him the things he liked. If I tried to feed him the other things it was a lot of vomiting and cranky baby, it just didn’t seem worth it to push him. In some ways I figured that back in the old days, like real old days people survived on minimal variety in food. As long as the right nutrients are there does it really matter if there is a wide variety?As Brandon grew older and was working his way to table food he was very selective in what he ate. Meat and eggs were on the highly dislike list for him, and I understood because I am extremely picky in those areas as well. Brandon leaned 42 | P a g e to hard and crunchy or consistent in texture like grits, but oatmeal was a no go. Things that didn’t appeal to him were slimy, soggy, or things that could vary in texture. From talking to others with texture issues this varies between each person. Most people with texture issues need to separate each food they are eating and eat each item in its entirety before they move to the next. I remember growing up and having people comment on the way I separated my food, and they found it odd that I had as I called it a “soggy phobia”. It is actually easy to work around once you are in control of what you are putting in your mouth. It can be embarrassing because sometimes a certain food is fine until there is a texture that you feel and then you are done; there is no forcing yourself to finish that bite. Once you experience that you pretty much are done with that food forever. In high school I worked at a fast food burger place and loved their chicken sandwich, until one day I bit into the sandwich and there was a change in the texture, a small, little bit harder gristle or grit and I thought I was going to be sick, I had to get it out of my mouth and still to this day feel sick at the thought of the sandwich. When I went out to eat and wanted a burger, I had to order the bun toasted and on the side for me to assemble myself. All meat has to be trimmed and free of fat and gristle. For many years I claimed I didn’t like chicken because of how picky I was with it, I didn’t want to offend anyone by picking through and trimming out all the pieces I couldn’t handle eating. Same went for other meats but it seemed to be more expectable to trim out your steak. I couldn’t eat the box mixes that you added your own hamburger, for some reason they gave a strange grit to the burger and I couldn’t handle it. To be honest these days it’s easy because I am usually the one to cook, when my husband cooks he is familiar enough with my specific likings that it usually doesn’t get in the way. I no longer eat wheat which cuts out a lot of the “soggy” food in my diet, but there is a lot I will not eat. The point is it hasn’t stopped me from eating altogether; it has just changed how I eat compared to others. I think when I didn’t seem panicked or really respond to the fact that this was a possibility for my son the clinic was concerned. I continued on with that thought and thought more about what I was trying to feed him and knowing how I was, I took in to account of the things I wouldn’t eat because of the texture, which was a lot in baby world. Everything is odd textured when it comes to baby food and the things you try to start out with for table food. Funny things like pureed 43 | P a g e banana were good, but a banana wasn’t. It seemed like aside from Brandon’s shakes, which he loves very much, he wanted crunchy. The only thing that he would eat besides crunchy things were grits, now I know this sounds silly but I agree with, grits feel like crunchy food in your mouth, they are consistent in texture, and they are yummy. The things with crunchy and grits is most of it isn’t really packed with a lot of great nutrients. I went on my merry way of feeding him according to his texture issues, this was frowned on. I found it silly and understandable at the same time when they wanted to refer Brandon to a group to aid him in this area. On one hand the old age of things, such as I am fine I never needed to have help, but then the thought crept in that its really cool that they have help for this issue now. A friend from church who is and Occupational Therapist said basically let him play with his food give him things you know he doesn’t like and let him get used to it by playing with it. After meeting with Brandon’s Occupational Therapist I was really happy to see the ways that they would work with him and try to get him comfortable with food textures. If your child has these issues there is a lot you can learn from an Occupational Therapist and there may even be a state funded program that sends them to your house at little to no cost.My whole take on this process is, it’s a process you still need to give your child what they need, no matter how that happens. I have never felt a feeding tube is the right answer to this, especially when you haven’t tried other methods. I do agree for some people it may come to this, but it isn’t amongst the first answers, yet the last. I believe in my method and that it works, I have seen it work. I feel it is pushed by the medical community because they can’t trust parents to commit to do what it takes. The parents don’t know, understand or have the passion for the nutrition aspect and it can get confusing and overwhelming. This is what you look to the medical staff and nutritionist to help you with and if it is not well advised you end up with a feeding tube when it may have only needed to be a more specific diet plan. Nutrition and eating issues are a lot harder to navigate. I am actually very disappointed in the whole nutrition side of this. If I had someone like me to go around and help people with their children’s nutrition we wouldn’t have as many children with feeding tubes. I am not blaming parents or even fully doctors, but who ever out there has decided the way for CF’er to eat is way off, its old methods, like twenty plus years old. CF has changed greatly in the past five years yet nothing has changed on the nutrition side. I think texture issues are a big factor for 44 | P a g e a lot of CF’ers and that’s ok. We should be ready to work around these obstacles and we shouldn’t let these threats scare us of needing to feed our children a certain way. Many appointments I was given the good old, well his weight is good but he needs to be eating more of a variety of foods. I guess to me it can come off discouraging and make you feel like you have to be getting your child to eat certain things, then in turn they lose weight because you are stressing them out and you don’t seem to understand that there is no way they are going to eat this, it’s disgusting to them. I will tell you bluntly, the foods that I don’t like the texture of, I don’t like, I have never liked and as many times as I have tried them, I still don’t like, becoming more comfortable with the certain texture had not made me want to put it in my mouth and I believe it will never change for me. I enjoy a breakfast protein shake filled with the same things that many people will prefer to eat rather than drink. I prefer to eat the things that aren’t going to make me get sick and for many of you out there just think of things you do not like, is there any way you will ever like them. I am not saying that it’s not good to try things, like I hated asparagus as a child but love it as an adult, but that had to do with taste, not texture. You may find over time there is a common thing like “soggy” and you can learn to prepare foods so they aren’t “soggy”. When you have an Occupational Therapist involved at an early age there may be ways to decrease the issue or work them into it slowly, either way it’s worth a try and continue to supplement until they get there.I want you to understand that this isn’t horrible, it isn’t a big deal, and isn’t something that should warrant a feeding tube. Feeding tubes are very useful, for the proper reasons. If your child isn’t ready for certain textures or may not ever be able to handle certain textures its fine. If your child doesn’t like a certain thing, they don’t like it. When you get upset and worked up over it they just feel inadequate, it doesn’t change the fact that there is no way they can physically eat this food. Your job as their parent is to figure out what they do like and will eat and find things like that to give them and try out. If your child likes crunchy, get creative. Look high and low in the grocery store for healthy crunchy foods, broaden your own horizons. Their texture issue isn’t about you and the food you like; it’s about them and the food they like. I am actually giggling at the moment because I am letting the kids watch a movie called Warner Brotehrs “Happy Feet” directed and co-written by George Miller.It is about a penguin who danced instead 45 | P a g e of sang. He was rejected by the elders and the community because dancing wasn’t normal. The woman he loved felt she couldn’t love him because he couldn’t sing a love song, yet he could dance a beat she could sing to and create their own unique love song. In the end his differences saved his fellow penguins. What it says to me right now is just because my son is different doesn’t mean it’s wrong, and doesn’t mean he can’t get the things he wants out of life, he will just do it in a different unique way, and who knows it may even work towards a greater benefit. In a way I feel like the medical community treats texture issues as an unacceptable way, yet I view it as a different way. Once you learn to work with any issues that are different from the norm, instead of fight against it. Life will get so much easier. There is a big difference of fighting alongside something and fighting against it.Recommendations for fighting alongside a texture issue are to change your way of life to accommodate all your other family members’ issues as well as yours. It’s going to be tough and it’s going to take time to get your routine down. I have my texture issue, wheat and whey intolerance, my husband’s reflux and stomach sensitivities, my daughter’s whey intolerance, and dye allergy and my son’s texture issues, milk allergy and high protein, high fat diet. There are times where it’s not just a cut and dry meal, I think in most houses it is this way, or people go hungry. You have to know the difference of when and how to be strict with food rules. It is highly unfair to offer a child something they don’t like and that is the only offer of food. It is on the other hand perfectly fine to let them make the choice not to eat and go without when it’s something you know they like. With Brandon I make the meal/meals that are planned for that meal time and I cut up and offer him whatever is made, I give him his enzymes and let him play in the food for a good amount of time, there are sometimes where it is clearly undesired and not going to happen and within a minute it’s on the ground. Other foods may make it the first cut and serve as something interesting to play with for about five minutes and then is tossed to the ground. When it is something he is considering and unsure of he starts fiddling with it for a while, touching it to his mouth maybe even making it into his mouth and then either swallowed up as something he likes or spit out and played with some more. Generally most meals don’t please me enough as a sufficient meal for Brandon, the things he chooses to eat isn’t enough. I follow up at the end with a shake to make it a complete meal and he really prefers that right now. He prefers it and enjoys it and it’s more complete than a lot of the meals that end up on the table46 | P a g e anyway. Brandon eats solid foods just not the ones we all would like for him to eat, and that’s ok, supplementing is ok, and is what is mostly important in cases like this. On some days you can let it frustrate you on other days you can look at it as an opportunity. This isn’t hard once you get it down; it’s just something new you have to learn. You must make sure to believe in a healthy lifestyle especially for your CF’ers sake. Dealing with texture issues is going to be complicated if you don’t decide to look at as a way of life. If your hair has a colic in it you know there is no sense in fighting it, it’s going to do what it does, it is best to work with it and find a style that complements it. The same is true for all things this included, find something to work with it and compliment it, it will take the stress off you and your child and over time it will find its own unique way of things and be no big deal.It is interesting to me how many people with CF struggle with texture issues, mostly in young children. What you may be facing may just be a food aversion issues in general. This is actually better than a texture issues once resolved. Our children are set up for failure to thrive on food from day one. Not only do they have the CF factor, they most likely have GERD (gastro esophageal reflux disease). After you factor those things in then you have to factor that at very young ages they are forced to take medicine in food, and have vitamin supplements orally as well as other oral medicines. Everything they put in their mouth is not pleasant and then we try to put food in their mouth and it causes an instant rejection, which I completely understand. Oh and let’s not forget breathing, I find it harder to eat when I am sick and having a harder time breathing, yet our children have a hard time breathing every day. I can imagine it would be exhausting and sometimes painful to eat once you consider all the things they have going on. This is when food needs to become fun, play with your child and their food, search out a good Occupational Therapist who knows silly tricks, or try some on your own. Once the stress is off and as long as things are not rushed and fun they may be more willing to put something in their mouth. It is a process and there will be times of regressing when they are stressed. It may also be used as a form of control. When we feel out of control and highly stressed we are going to find things we can control, and for our kids sometimes that’s the only thing they feel in control of. When you are given medicine, shots, throat swabs, hospitalized, IV’s, and so on they feel like they have no choices in what happens to their bodies, at a young age there may 47 | P a g e also be no way to communicate what we know to be true for them. This to them is their protest and their big statement. We as parents need to sympathies and give them control in other areas and make eating something fun to do and rewarding with a lot of over exaggerated praise and respect for choices. No shoving food in and tricking them, if they turn their head it’s a sign that they do not want what you are giving them. You know your child so listen to them and incorporate things that they enjoy to help the process. With a lot of hard work and patients you and your child can get through this and it will be rewarding for you both. The biggest key is to not give up on them. You need to take the stress off of you too; they will feed off of you. Whether it is a texture issue, food aversion, control issue, or possibly several issues it is not the marker for their lives or a set reason for a feeding tube. A feeding tube is for when your child is not thriving and is underweight, when you have tried all options and nothing seems to work, then consider it. Don’t give up on you child and don’t let them give up on themselves. If they see you give up on them then they will give up on themselves setting the stage for the rest of their life in this disease. You are the boss and it is your choice. If you feel it is the right choice then it is time to do so, but only then. If you have any doubt and thoughts of trying other methods, and as long as your child is not extremely underweight then put the thought on hold and set a time frame to really work at feeding. A lot can happen in just one month and especially in three months. Talk to your doctor and seek assistance, research ideas and devote yourself to your plan. A silly as it sounds one thing has always stuck with me especially in hard times such as these, “I can do all things through Christ who strengthens me” Philippians 4:13. Chapter 6ConclusionThe way Cystic fibrosis eats right now disturbs me entirely. It makes no sense and it is astonishing to me that it hasn’t changed through all these years. It is quite common to have CF related diabetes. This is not exactly the same as a non CF’er with diabetes, but it has commonalities as well. I know its most likely in this48 | P a g e disease at some point due to pancreatic issues. I fear that with the growing age in CF’ers this is only going to get worse. Which makes me even more passionate about being healthy, you may not be able to prevent it, but possibly prolong it and have a sufficient diet already in place once it happens.I see so many things in Brandon and his diet that is considered by many rather strange and non CF like. My Aunt Jill mother to Rachel with CF even stated she didn’t understand Brandon’s diet because it was rather different from Rachel’s diet. I on the other hand have never been concerned, but rather impressed with all the things I was stumbling upon in Brandon’s diet. Many things became clear and that was that, diet is extremely important to the health of all CF’ers. This is not any secret, but I don’t think many have really dug into a different diet other than recommended diet by their CF doctor and nutritionist. To be honest I would have to say it would have not really happened this way for me if it weren’t for Brandon’s allergy and texture issues. I had to get creative and it worked, it worked well, better than what they were recommending. The doctor I believe was genuinely scared and on top of us like white on rice. I don’t blame her it’s her job, I knew it would take some time for them to see that this is working and it’s not just dumb luck. Some of it felt like dumb luck to me at first until I understood it. I was just going for healthy and high fat, high protein. Brandon was the one who did most of the work. It was his poop that I investigated and it was his love or hatred for certain foods. He liked good fat and good foods that were beneficial to his body. After the threat of the feeding tube for Brandon over a few ounces I felt like it was time to put my beliefs and knowledge where my mouth was. I proved to the medical staff at the CF clinic that there are other ways. After a month’s time I brought Brandon back in for his follow up appointment and he gained two and a half pounds which is a lot for a child 16 months old to gain in a month, I wanted to be totally sure that they could not have anything to say to me. When the doctor came in and examined him she was shocked at his weight gain and then she asked how we did it. I told her that first of all the formula she recommended was not working, nor was milk going to work, so he was going to be on soy and that IS what worked. I told her about Brandon’s Ultimate Protein Shake. She wrote down all the ingredients and looked at it for a second and looked up at me and said “I am glad you found out something that worked. Keep up the good work.” Then she talked about other matters and left. My husband looked at me and high fived me, 49 | P a g e he said I looked like I was gloating in my head. Truth is I was smiling from ear to ear and I was proud of myself, of course there was a part of me that was saying “that’s what I thought” and then it moved into an imaginative happy dance. I had prayed the night before that if this was a confirmed success that this was it, not just for my little boy but for all CF’ers it was a moment of joy for me. I found out what works! Since my plan works it almost sounds silly to go to the old way of butter and fast food.I now know that natural enzymes are super important in the CF body. High fat not a lot of unsaturated fat but true honest healthy fat is important. High protein and good activity to build muscle is a very important factor. Knowing and utilizing supplements is another area that makes a big difference in CF health. I feel once you have it down, and understand it, it makes sense. If you ask any nutritionist if they would recommend the same food they do to CF patients to non CF patients they would say “NO” and say it would be a rather unhealthy life style and that it could cause things like diabetes, or heart issues, and obesity. I know we may not need to fear obesity in our CF’ers but they still need to have healthy bodies. I can’t say for right now the impact as far as life expectancy, but I can make a good guess that their bodies will be more equipped for the fight, we’ve upgraded their armor and to add we have increased the quality of their lives. Chapter 7 RecipesMilk RecipesTIP FOR INFANTS: You may need to use a feeder nipple to bottle for some of these recipes, also don’t be afraid to add baby cereal to milk For breast fed babies.Mother should consume cod liver oil, hemp seed nut and her favorite form of good fat For formula fed babies:50 | P a g e Grind hemp seed nut in purified water, use this water mixture once to twice a day with formula (should consume 1/8 of a tablespoon a day)For more protein throughout the day you can also buy a protein powder of choice and add one half the recommended adult amount into regular formula mix. Goat’s milk:Use Mayneberg condensed goat milk (found in the baking isle in some grocery stores, health food/natural food store, or online)(if using farm fresh make sure it is a trustworthy source and fed with good feed, make sure if not pasteurized, pasteurize it yourself at home)Empty one can condensed goat’s milk into a pitcherAdd three cans worth of purified water into the pitcherAdd one to two tablespoons brown rice syrup into Magic Bullet or blenderAdd a tablespoon of hempseed nut into Magic bullet or blenderAdd half a cup of purified water into Magic bullet or blenderAdd two acidophilus capsules opened up into Magic bullet or blenderLiquefy all items in Magic bullet or blender to the best of your abilityAdd this mixture to the mixture in the pitcherThis should be drunk in 2-3 days and then is no longer good. If you find yourself going through it rather quick you may want to double the recipe.(Little room in the fridge? Cut out three cans of water and turns into a concentrate, also great for flying or traveling. Just add one fourth of mix to three fourths purified water)This recipe works up to one year old then it needs to be changed to whole milk version by using one can of goats milk to one can of purified water. For concentrate version add half of whole milk mix to half water. Soy milk one year and older51 | P a g e Start with your favorite brand and flavor of soy milkAdd the sport version soy protein powder (adult version) make sure the flavor you get will go with the soy milk flavorMix the two together and enjoy, best to do for each drink, not good to sit in the fridge more than 24 hours with the protein powderYou may also blend up one and a half tablespoons of hemp seed nut in the milk you, and then add it to the carton, if you choose this method there is no “need” to add protein powder to every cup, this does cut cost and is just as good for protein and fat!Baby Cereal* When it comes to baby cereal it is best to choose a brown rice cereal, you will want a feeder nipple or the bottle if you are adding to the milk, which is recommended from birth till off the bottle in every bottle.* If your child has allergies make sure to check out the ingredients, some baby cereals use whey and other ingredients. Homemade Cereal MixGrind in grinder or Magic bullet all ingredients. Then add and mix together.2 cups plain rolled oats1 cup flaxseed meal1 cup grape nut cerealMixing BoxesI find a lot of times that it seemed to be more cost efficient to mix and using other regular adult cereals together. This is a simple preference thing so be 52 | P a g e creative with the different grains. Remember trial and error is the best way to learn. Baby Food Banana-Avacado1 ripe avocado (should feel firm with a slight give, not squishy)2 regular size bananas½ squeezed lime (or tablespoon lime juice in a bottle)¼ cup purified waterPuree all ingredients, fill in ice cube trays or small plastic containers and freeze. If in a container without a lid or in ice cube trays transfer and date in baggies.Banana-Nut-AvocadoSame as above but add 1tablespoon Hemp seed nutPapaya and Banana1 ripe papaya cubed and steamed, or blanched 4-6 slightly heated bananas (put full banana in skillet and warm)Puree both fruits adding purified water if needed. If your child has a sweet tooth you may wish to add 1-3 tablespoons honey.Freeze and store as suggested as aboveApplesauceWash, peel and core apples, cut into chunks53 | P a g e Add to crock-pot or to pot on stove with an inch of waterCook on high covered till they are completely soft all the way throughMash by hand or puree depending on consistency desired (for texture kids puree it)You can use this for administering enzymes and not worry about added sugars; also it makes a great add in item to any of your other fruit purees. Apples and Apricots Apples and MangoApples and Blueberries Apples and GuavaYou can also make pear sauce the same way and mix it with many fruits as well.Iron Please1 bag of lentils cooked ( sort clean and cook as directed)Start with 2-3 tablespoons of purified water¼ teaspoon salt or to taste (season as you so chose)Puree ingredients Freeze and store as previously directedLentils tend to be a little bland on their own some kids like that and some do not, if your child doesn’t feel free to mix with veggie puree such as sweet potatoes or sweet peas Veggie PureeChoose your veggie and cooked in water and oil, steam, or blanchedPuree the cooked veggie Freeze and store as suggested as aboveFeel free to combine any veggies you feel would be goodSeason as your family would season54 | P a g e Taste testFruit PureeChoose you fruit and blanch, bake or steam except avocado and banana which are fine rawPuree the fruit with either milk or purified waterFreeze and store as suggested aboveFeel free to combine any fruits you feel will be goodFor added sweetness bananas add good sweetness as well as 1-3 tablespoons honeyTaste test I will be the one to tell you that you can look up recipes on line and you can follow them to a T but its really simple and to the point. Cook it, and then, puree it. You can get creative or keep it basic. What seems to work the best is when cooking your family dinners make extra of the veggies and consider other foods that you can puree. Also think about how you eat it, if you have sweet potatoes do you butter and brown sugar it? If you have regular potatoes do you butter and salt, butter salt and cheese? Whatever you do, consider making it a puree-able version and turn it into a meal for the baby. A little bit of real butter isn’t horrible, just don’t overdo it; consider nut oils and other supplement items to mix with foods to pack an extra punch.Protein ShakesBrandon’s Ultimate Protein Shake55 | P a g e ¼ to ½ of and avocado¼ to ½ of a banana ( or more if you so choose)1 tablespoon hemp seed nut ( 1 tablespoon per 25 pounds)1-2 quarter size piece shiitake mushroom (no stems) 1 scoop of protein powder (chocolate to hide other flavors)1 scoop egg white protein (optional)8 oz milk of choice, fill till full in Magic bullet (if using soy milk I use flavored, not plain)Put all ingredients into a Magic bullet or blender and liquefy, Enjoy! Peanut Butter and Chocolate Shake2 tablespoons peanut butter1 scoop chocolate protein powder of choice8 oz milk of choice1 tablespoon hempseed nutPut all ingredients into a Magic bullet or blender and liquefy, also good if you add half to whole banana.Sweet Banana½ to whole banana (may want to pre chop and freeze, but not necessary)1-2 tablespoon honey4 tablespoons silken tofu8 oz vanilla soy milk (or other sweetened milk)56 | P a g e Put all ingredients into a Magic bullet or blender and liquefy Berry Good Protein ½ of a banana1-2 tablespoons honey4 tablespoon silken tofu1/3 cup frozen berries1 tablespoon hemp seed nut1-2 scoops egg white protein8 oz vanilla soy milk (or other sweetened milk)Put all ingredients into a Magic bullet or blender and liquefy Penny Pinching Protein1-2 scoops egg white protein (may omit if not on hand)½ of a banana1 tablespoon hemp seed nut8 oz vanilla or chocolate soy milk (or other sweetened milk)Put all ingredients into a Magic bullet or blender and liquefy Meal Time Pappy’s Pancakes57 | P a g e Mama’s Grits1 can of instant grits (cook as many servings as you choose)½ tablespoon of real butter per servings ½-1 tablespoon honey per serving1 scoop egg white protein per servingServer and enjoy! Lemon Bacon1 package bacon (turkey bacon works too for my pork free friends)2 lemons (or lemon juice substitute)PepperAdd 1 squeezed lemon to skillet and heat on medium heatAdd bacon slices Sprinkle lightly with pepper Add more lemon and pepper as needed through the cooking processEasy PBB&H2 slices of bread of choice or wrapAdd peanut butter to first slice or wrapLong slices of banana for sandwich or whole for wrap58 | P a g e Add 1 tablespoon honey, spread throughout Add second slice or wrap around banana for wrapCut in 4ths for sandwich or eat as wrap or cut into 1 inch pinwheels for fun.My Mac is Packin’ 1 package cooked macaroni noodles (gluten free preferred) 1-2 packages shredded cheese of choice (I usually go for cheddar or colby jack, you may also use veggie cheese for milk allergies) 1 package firm tofu (chop into to small pieces)(omit for soy allergy) 4-6 scoops egg white protein (omit for egg allergy) Preheat oven to 350 degrees Layer noodles, tofu, sprinkled egg white protein powder, and then cheese into a casserole dish or baking pan, continue to layer until you are out of ingredients. Place into oven and bake for 20 minutes or till cheese is meltedGood For You Fried Chicken2-3 chicken breast (chunked, or sliced, however you chose)1-2 tablespoons chicken seasoning of choice1-2 tablespoons hemp seed nut59 | P a g e 1/3 cup flax meal1-2 tablespoon ground/ or crushed Almond or other favorite nut of choice(omit for nut allergy)1 medium tomato1 large egg (omit for egg allergy)Olive oilCut chicken the way you wish whether you are wanting, strips or nuggets. Set chicken aside.Add seasoning, hemp seed nut, flax meal, and crushed almond into a bowlAdd squished tomato (not including the skin) and egg in to a separate bowlHeat enough oil to cover the bottom of the pan about half an inch high, on high heatDip chicken into the liquid mix of tomato and eggNext dip chicken into the dry mix bowl making sure to coat it wellUsing tongs put coated chicken into heated oil, keep pieces well spaced out.Time will vary depending on size, with chunks it will take a few minutes per side, make sure to flip the chicken half way through cooking.Omega Tostada1 package hard corn tortillas1 package cheese of choice1 can refried beans Any meat desired cut and cooked (ground beef, and chicken are great!)(Optional)60 | P a g e Salsa (optional)Taco sauce (optional)3 tablespoons flax mealSeasonings of choice (taco seasoning, cayenne, salt, pepper, ect..)Shredded spinach or lettuce of choice (optional)Tomato diced (optional)Any other toppings, black olive, onion, peppers, ect..Pre-heat oven to 350Lay corn tortillas out on baking sheetMix flax meal, refried beans, and any seasonings and or salsaSpread bean mix on top of corn tortilla (as many as your family wants to eat)Add meat if you have chosen to use meatTop with cheeseBake for 5 minutes or till cheese is melted, may take longer for non dairy cheeseTop with spinach/lettuce, and tomato and whatever toppings you selected Add salsa or taco sauce (optional)I like to do the basic and let the family top themselves the way they like. For little ones break down and put toppings on side to serve. I make some with and some without meat.Beef and Veggie Stew61 | P a g e Before bed add 2-3 pound roast of choice into crockpot on low1-2 cups beef brothSeason with meat tenderizer Add 1/8 cup Worcestershire sauce on top of meat (I just eye ball it)I also like to prepare the ingredients at night so I can just dump them inIn the morning add:Chopped bite size potatoesChopped bites size carrot (or whole baby carrots)Leak or Onion chopped bite size (do not exclude)Chopped red cabbageLentils (do not exclude)½ cup flax meal (do not exclude)Shiitake mushroom chopped bite size or smaller (do not exclude)Minced or sliced garlic (amount to taste, I generally use 2-3 cloves) (do not exclude)Seasoning of choice to taste (cumin, salt, pepper, ect...)Few more splashes of Worcestershire sauce.(Add or exclude select veggies per your families’ likings)Cook on high low till supper timeFor kids drain juice and possibly even separate for picky eater or child with texture issues.62 | P a g eI’m a Nut1 package noodles, gluten free preferred, cooked and drained2 cups fresh basil leaves, packed down 1/2 cup extra virgin olive oil (EVOO) 1/3 cup pine nuts, walnuts (or any other nut that appeals to you, for nut allergy use hemp seed nut, I like half hemp seed nut half almond) 3 medium sized garlic cloves, minced (optional) Salt and season to taste Any desired cheese you wish to add (optional)Using magic bullet or food processor pulse larger nuts then add basil and continue to pulse down a few times. Add EVOO slowly to the mix while food processor is running, stopping to scrap sides periodically, (for magic bullet just add it all and recap to blend down) add garlic and blend 30 seconds or so longer, just till its blended in good. Cook in sauce pan till heated, do not boil or over heat. Add the mix to the cooked pasta, also great as a topper to many things, potato, veggies, or salad. May also use a dip for breads Spruced up Ground MeatAll suggestions are based on 1 pound ground meat Add 1/4-1/2 cup flax meal to ground meat, it will help hold it together for burgers and add some good omegasAdd 1-2 tablespoons hemp seed nut to cooked and drained ground chuck or ground steak, along with favorite salsa for tacos or other Mexican mealsTo really pack a punch add both flax and hemp seed nut to any ground meat you desire just note that hemp seed nut needs to be added at the end so you don’t destroy all the good benefits by heat. Use flax meal in place of bread crumbs for meat loaf and meat balls. 63 | P a g e French ToastyFor 1-2 sandwiches2 eggs cracked open into a bowl¾ cup milk of choice (unsweetened) added to bowl with egg¼ teaspoon salt (or season to taste, I like to use chicken seasoning mix)1-2 slices non processed cheese of choice (use veggies slices for milk allergy)2-4 slices bread of choiceWhisk eggs, milk and seasoning in bowlHeat skillet on medium heatDip slices of bread and lay on skilletFlip when first side is golden brownWhen both sides are cooked add cheese on top of one slice and place second slice on top of cheese. Continue to cook and flip if needed like a regular cheese toasty. For texture issues smush bread flat so there will be no soggy center. For toddlers cut into four squares or strips. If your child eats meat consider adding sliced deli meat of choice.When you are cooking have fun and experiment often. Chose necessary staples for your cupboards and keep them stocked. Here is a list of my staples and some of the uses: Flax meal: add to meats, add to baking recipes which is directed on packaging, add as a thickener to stews and sauces. Hemp seed nut: add to shakes, beverages, use as a topper to nearly anything, very versatile and great to add to whatever I can64 | P a g e  Egg white protein: add to shakes and hot cereals, add to nearly anything aside from bland flavored foods, unless egg is a appreciated flavor for that dish Gluten free pasta: for a quick pasta dish, use anywhere you would use regular pasta Gluten free flour mix: use in place of white flour, not only is white flour bad for CF’ers most gluten free mixes have nut and bean flours which add a great amount of protein.  Xanthium gum: add with gluten free flours per recipe specification Tofu: add in place of meat to stir fries and soups(firm), add to shakes in place of yogurt (silken) Your families choice of milk: use for drinking, shakes, and other recipes Eggs (farm fresh preferred): use as part of your yummy breakfast, used a lot in many recipes Olive oil: use for cooking Shiitake mushroom: added to shakes, stews, soups, salads, and eaten raw  Avocado: added to shakes daily Banana: added to shakes daily, eaten raw along with breakfast or for snacks Papaya puree used to give enzymes and added into shakes, or papaya mint flavored chewables, serve as enzyme booster, ant- acid and an after meal mint! Acidophilus added to milk or applesauce, if able to swallow pills takes on an empty stomach with water. 65 | P a g e 66 | P a g e 67 | P a g e

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