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Parents’Parents’ GuideGuide toto HydrocephalusHydrocephalus

Syed Khalid • John Ruge, MD, FAANS

Letter from the author

Dear Parents,

Recently, your child was diagnosed as having . You are not alone. Approximately one in every 500 individuals is diagnosed with hydrocephalus. I hope the following information acquaints you with hydrocephalus so that you will have a better under standing of the implications of this disease process.

To those that don’t know about hydrocephalus, it can be a frightening and overwhelming diagnosis. Yet, it can become only a small part of your child’s life. The typical patient with hydrocephalus is not in the hospital but in the community, leading a normal life.

A great deal of support can be gathered from other families of children affected by hydrocephalus, but you should keep in mind that each child is unique. Many of the questions you might have about hydrocephalus and treatment are impossible to address in the scope of this communication. I encourage you to address these questions with your physician. Exciting new treatment options are already curing many children.

I promise you that although challenges may lie ahead, the rewards of raising a child with hydrocephalus are great.

Sincerely,

John R. Ruge, MD, FAANS Pediatric Advocate Lutheran General Children’s Hospital

1 WhatWhat isis Hydrocephalus?Hydrocephalus?

Hydrocephalus is a condition in which There are an estimated 40,000 - the fluid bathing the brain and related performed each year () accumulates within in the US, making shunt the spaces of the brain, known as ventricles, most common procedure performed by causing an abnormal increase in pressure pediatric neurosurgeons. In most cases, the within the . If left untreated, this implantation of a shunt will successfully increased pressure can damage surrounding control hydrocephalus, but shunts do not brain tissue, resulting in a variety of brain cure hydrocephalus. function impairments. Hydrocephalus is most commonly treated by a surgical procedure, in which a neurosurgeon places a small tube, Hydrocephalus is a lifelong condition.

known as a shunt, in the child’s body. The However, with proper treatment and shunt reroutes the excess cerebrospinal fluid maintenance, children with hydrocephalus (CSF) from the brain to another part of the body, where the CSF can be safely reabsorbed can lead normal lives with few limitations. into the bloodstream.

Hydrocephalus (hi’dro-sef’a-lus) is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles. 2 Anatomy and Physiology The central is comprised of the brain and spinal cord. The bones of the skull (or the cranium) protect the brain, while the bones of the vertebral column (called vertebrae) protect the spinal cord. At , our are not fully formed and actually consist of several separate bones. The areas between these bones are called soft spots or fontanels. As we age, the bones of the skull fuse together, and by ages one to two, our soft spots have Need Image/Figure disappeared. The differences in the skulls of younger referenced children versus older children cause variations in how hydrocephalus presents itself, but we’ll discuss in copy below this later.

Three protective coverings, called the , also surround the brain and spinal cord. The meninges are thin membranes that tightly hug the brain and spinal cord beneath the bones of the skull and vertebral column offering another layer of protection. The outermost layer is named the dura mater, followed the by the inner layer named the arachnoid mater, and lastly the pia mater, which Figure 1 directly contacts the brain and spinal cord. CSF is constantly being produced and reabsorbed. A normal brain produces 500 milliliters (equivalent It is between these membranes that cerebrospinal to half a liter or 16 ounces) a day. Figure 1 outlines fluid flows. Cerebrospinal fluid (CSF) is an important the flow of CSF. Starting in the , fluid that circulates in the brain and spinal cord, CSF is produced by the , flowing flowing between the arachnoid mater and pia from the lateral ventricles through the Foramen of mater in a space termed the subarachnoid space. Monroe and into the . Here within the CSF completely surrounds the brain and spinal third ventricle is more choroid plexus, producing cord, allowing both delicate structures to float. CSF more CSF. From the third ventricle, CSF continues is a clear, colorless liquid, resembling salt water, its path through the long and narrow Aqueduct of that is actually a complex solution of protein and Sylvius and enters the . The fourth electrolytes that cushions the brain and spinal cord ventricle contains three tiny openings (foramina), from forceful blows, distributes important nutrients which allow CSF to flow out of the brain and into the and messengers throughout the brain and carries subarachnoid space. Once in this space, CSF flows away waste products. around the brain and spinal cord while small clusters Inside our are hollow, interconnected of cells on the surface of the brain, called arachnoid spaces, known as ventricles, filled with CSF. It is villi, reabsorb CSF into the bloodstream where it can here that delicate tufts of tissue, called choroid eventually be filtered by our kidneys and , along plexus, produce CSF. There are a total of four with the rest of our body fluids. CSF can also travel ventricles connected by narrow passageways. from the ventricles to the surrounding brain tissue by The passageways are the Foramen of Monroe passing through tiny spaces between the cells of our that connects the two lateral ventricles to the third brain and ultimately enter the subarachnoid space. ventricle, and the Aqueduct of Sylvius connects the third and fourth ventricles.

3 Causes of Hydrocephalus Congenital Causes of Hydrocephalus Congenital causes of hydrocephalus, the most Maintaining a normal flow of CSF requires a common form, occur when the condition is delicate balance between the rate of production and present at birth. The symptoms of this form of reabsorption. Anything that disrupts this balance hydrocephalus may not appear right after the child or interferes with the flow of CSF along its pathway is born, but the abnormal circulation of CSF has can cause hydrocephalus. Most commonly, this existed since birth. disruption stems from a blockage or obstruction. Since CSF is constantly being produced, blocking A few common congenital causes are: the flow causes CSF to backup and accumulate Aqueductal upstream from the blockage. This results in a is a very common cause of swelling of the ventricles, as CSF accumulates with congenital hydrocephalus. Usually these children nowhere to go. As they swell, the ventricles push on do quite well. The thin channel connecting the third the surrounding brain tissue, causing an increase and fourth ventricle (the Aqueduct of Sylvius) may of pressure inside the skull, known as intracranial not fully develop, thereby blocking the flow of CSF. pressure (ICP). This channel is usually only 1-2 mm in diameter. In addition to congenital causes for aqueductal stenosis, an inflammatory process can scar the The disruption of CSF Flow that stems from channel and cause it to close. Blood or blockage or obstruction can have two basic can also cause the channel to close. However, the exact cause for the closure of the aqueduct is often underlying causes: congenital and acquired. unknown. Arachnoid Cysts Arachnoid cysts are CSF-filled sacs that develop between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord. These cysts may block the flow of the CSF, producing hydrocephalus. 4 Dandy-Walker Syndrome with myelomeningocele who already has a shunt in Dandy-Walker syndrome is a brain malformation in place, parents should suspect a shunt malfunction which the fourth ventricle becomes enlarged, due and contact their physician. to the inability of CSF to exit the fourth ventricle. This blockage of CSF results in the enlargement of Acquired Causes of Hydrocephalus the entire and may include an With acquired hydrocephalus, a child is born with a increase in pressure as well. Other features include normal CSF circulation, which is later interrupted. a partially developed cerebellum and impaired Some of the processes that may interrupt normal connections between the right and left sides of the CSF fluid pathways, leading to hydrocephalus, brain. The Aqueduct of Sylvius, the channel allowing include , severe head injuries, CSF to flow from the third ventricle to the fourth and brain tumors. ventricle, may also be obstructed. A few common acquired causes are: , Myelomeningocele (MM) Brain Tumors Spina bifida (or myelomeningocele) refers to a Brain tumors can push against the small channels defect in the development of the spinal cord. In this and ventricles in the CSF pathway, blocking the condition, the spinal canal fails to fully close before flow of CSF. In some cases, tumors actually insert birth. Myelomeningocele can also range from very themselves into one of the ventricles, blocking CSF mild to very severe. Ninety percent of children from exiting the ventricle. Removing the tumor born with this condition develop hydrocephalus can sometimes relieve the hydrocephalus. In other within the first two weeks of life. Sometimes cases, the tumor causes an irreversible obstruction, hydrocephalus is due in part to a malformation, allowing hydrocephalus to persist even after the the Chiari II malformation, in the back of the brain. tumor has been removed. Normally, two important structures, the cerebellum and brain stem, are located in the lower back of the skull, above the foramen magnum, a circular Infections can sometimes cause the thin membrane opening at the base of the skull. When part of lining the CSF pathway to scar. Scars can prevent the cerebellum protrudes through the foramen the reabsorption of CSF and also obstruct the flow magnum and into the spinal canal, a Chiari II (or of CSF as it moves through the narrow passages Arnold-Chiari II) malformation results. This applies of the ventricles. Meningitis, of the pressure to the and cerebellum, which, membranes covering the brain and spinal cord, is in turn, can affect the function of these structures one type of serious infection associated with the and block the flow of CSF. The development of development of hydrocephalus. hydrocephalus can cause Chiari symptoms to appear or worsen already present symptoms. These Intraventricular Hemorrhage additional symptoms include apnea (pauses in the Intraventricular hemorrhage (IVH) refers to bleeding normal pattern), bradycardia (slowing inside the brain’s ventricles where CSF is produced of the heartbeat), facial (such as a lack of and circulates. This bleeding may block the normal expression while crying), difficulty swallowing and pathway of CSF flow and result in hydrocephalus. inability to protect the airway. This inability may IVH is particularly common in premature infants but cause food or secretions to enter the lungs, causing can also result from clotting abnormalities, head pneumonia and further difficulties breathing. Other injuries and blood vessel ruptures. symptoms may include changes in eye movement control, problems with balance or coordination and . Most children with myelomeningocele have some degree of the Chiari II malformation, and approximately 20 percent to 30 percent of these children will, at some time in their lives, develop symptoms. If these symptoms develop in a child 5 Treatment of Hydrocephalus In most cases, hydrocephalus is a lifelong condition. There are two forms of treatment, ETV and shunts. The first, called Endoscopic Third (ETV), is a technique that opens an alternative passageway inside the brain to re-establish effective flow of CSF. Though not right for everyone, this treatment will often be the first line treatment option considered, since it does not require an object (valve or shunt) to be implanted into the patient, which reduces the risk of infection. This procedure also has the advantages of requiring fewer incisions, meaning Ventriculo-Peritoneal less discomfort, and a lower risk of long-term Shunt complications compared to other treatments. This is the cavity where the stomach, the liver, and Alternatively, the second form of treatment utilizes all the internal organs of the abdomen lie. The shunt a shunt. In this treatment, CSF can be rerouted into is not placed into the stomach, but rather the tube another body cavity to be reabsorbed. A thin tube floats around, just as the intestines float around, in made from flexible silicone, called a shunt, permits the . The fluid then drains from the the CSF to drain from the ventricular system into ventricle in the brain, down the thin tube into the another body cavity. The most common site for CSF peritoneal cavity, where it is reabsorbed again into absorption is the abdominal cavity. Each shunt is the bloodstream. The tube is not usually noticeable named for the anatomical site where it is used. For since it runs underneath the skin in the body’s fat. example, the most common shunt used today is a ventriculo-peritoneal shunt, which connects the In some children, a procedure called a third ventricle to the peritoneal or abdominal cavity. ventriculostomy may be performed by utilizing a neuro-endoscope, preventing the need for a There are many different types of shunts that can be permanent shunt placement. Children with non- used: communicating hydrocephalus, in which cerebral Ventriculo-Peritoneal Shunt spinal fluid is blocked at some point in the ventricular The ventriculo-peritoneal shunt is placed by a system, versus communicating hydrocephalus, neurosurgeon. The operation involves shaving a in which the blockage is outside the ventricular small amount of hair over the side of the head where system, may be candidates for this procedure. The the surgeon chooses to place the shunt. The surgeon neuro-endoscope is used to open a communication makes an incision through the scalp and a small hole between the third ventricle and subarachnoid space, in the skull, through which a fiber optic endoscope, which allows internal drainage of the cerebrospinal called a neuro-endoscope may be inserted. This fluid. Third ventriculostomy is successful in allows the surgeon to visualize the intraventricular approximately 70 percent of patients. Third anatomy. The can then be accurately ventriculostomy may also be recommended by your placed. The remainder of the tubing is then passed neurosurgeon at the time of shunt revision. underneath the skin with a special shunt-passing When the child awakens from the general anesthetic, device. This may require a separate incision to the surgeon may wish to keep the child’s head at a facilitate this passage at the back of the skull or neck particular angle or elevation for several days. Once area. The tubing then courses underneath the skin the bowel sounds are active, the child is then started into a separate incision over the child’s abdomen. on feedings and allowed to increase his/her activity. Through this incision, the shunt is placed into the Since the shunt is very pliable and sturdy, no special abdominal (peritoneal) cavity. The peritoneal cavity precautions or restrictions on physical activity are has a very large absorptive surface area allowing it usually given (with the exception of avoiding contact to absorb the CSF delivered by the shunt’s tubing. 6 sports). In most instances, once the hair grows back, the only people who will be aware that your child has a shunt are you, your child, your family members and your child’s teacher. As children grow older, the amount of fat in the skin can sometimes make it difficult to even feel the shunt along its course under the skin. Usually, enough tubing is placed to accommodate the growth of a child. However, the length of tubing placed in the ventricular system is limited by the size of the child at the time of surgery. A young child or infant will “outgrow the shunt,” or the shunt will slowly change its position in relation to the ventricular system due to growth of the brain, Ventriculo-Atrial sometimes requiring the tubing to be lengthened Shunt (shunt revision). The need for this will manifest itself as a shunt malfunction. This is described later in the Ventriculo-Atrial Shunt booklet. The third type of shunt used is a ventriculo-atrial Ventriculo-Pleural Shunt shunt. This shunt courses underneath the skin of the The next most common shunt used is a ventriculo- scalp into the area of the neck, where it is placed into pleural shunt. This shunt drains CSF from the one of the large , with its tip threaded down child’s ventricular system into a space within the into the part of the heart, called the right atrium, chest known as the pleural cavity. In this cavity, that normally recieves blood from the body. The the lungs move up and down making the cavity an CSF then drains directly into the bloodstream and exellent absorptive space for the CSF drained by is absorbed by the body. This shunt is used less the shunt’s tubing. The ventriculo-pleural shunt is frequently and usually only when there is a reason used in some cases. However, it has its own set of not to use other shunts. This is because some of the complications. One of the more frequent problems complications associated with the ventriculo-atrial with a ventriculo-pleural shunt is that the pleural shunt are more severe than those associated with cavity cannot always absorb the amount of CSF that other shunts. Because the shunt has direct access the brain produces. The potential buildup of excess to the bloodstream, ventriculo-atrial shunts may fluid may cause pressure in the lungs, resulting in cause a serious bloodbourne infection. Additionally, breathing difficulties. This shunt, however, is the the ventriculo-atrial shunt’s placement in the shunt of choice in some cases. heart requires a more complicated surgery which can potentially lead to more obstacles. However, there are many situations when a ventriculo-atrial shunt is the preferred shunt, either temporarily or permanently.

The above three shunts are not the only type of shunts utilized. Your child’s neurosurgeon may select a different body cavity into which to drain the CSF temporarily or permanently, based on the specific needs of your child. Your neurosurgeon will determine which shunt system is best.

Ventriculo-Pleural Shunt 7 Regardless of the body cavity into which the shunt drains, the shunt device is essentially a tube with a valve inserted somewhere along its length. The valve can often be felt under the skin and may have associated with it a reservoir or a small chamber, where a small needle can be inserted through the skin to access the CSF. There are times when this procedure, called a “shunt tap,” is needed. The most common reason for trying to obtain CSF from a shunt is to check for the possibility of infection and sometimes to assist in determining if the shunt is functioning properly.

8 Valve Mechanisms Fixed vs. Adjustable Pressure Valves All three of these valve designs use either a fixed or To assure that the rate of flow through the shunt is adjustable pressure valve. Though each valve design controlled, a valve is placed in the shunt’s tubing functions in its own way, all valves depend on a system. In addition, the function of the valve may be opening pressure threshold to regulate the flow of modified with the addition of accessories, such as a CSF through the shunt’s tubing. Fixed pressure valves siphon control, a gravity compensating device or a regulate the flow of CSF based on a predetermined flow regulating device. pressure setting. Once this threshold pressure is Currently, there are three basic valve designs: reached, the valve will open, allowing CSF to flow through the tubing. Unlike fixed valves which do not Slit Valves allow clinicians to change the pressure setting once These relatively old valves are characterized by implanted, adjustable valves can be altered by the a cut (slit) in the wall of the end of the catheter. clinician as needed throughout your child’s life. Once Fluid pressure within the catheter, if sufficient, adjusted to a specific setting, these valves operate like will open the slit and allow CSF to flow out of a fixed pressure valve until re-adjusted by your child’s the catheter. The pressure at which the slit will neurosurgeon. open depends on the mechanical properties of the slit, i.e. the stiffness of the silicone, the For adjustable valves, the number of modifiable 1 settings depends on the shunt’s manufacturer. The thickness of the wall and the length of the slit. The aging of the silicone used in this type of valves opening pressure can be changed during valve may significantly alter its performance. a routine office visit by using a special tool that uses a magnetic field. Pressure settings must be Diaphragm Valves reprogrammed until the optimal setting is reached, For these valves, a thin piece of material which may take up to several trials. In order to within the valve, called a diaphragm, moves correctly control CSF reabsorption, some gravity- in response to pressure differences. Pressure compensating (anti-siphon) mechanism may be differences cause the diaphragm to move, needed in selected cases. Also, because these devices allowing CSF to flow around the diaphragm. contain metal, some programmable valves can show When the pressure is reduced (after some up on imaging scans, such as X-Ray or CT scans. They 2CSF flows through the valve), the diaphragm also may be reprogrammed in strong magnetic fields, returns to its original position and seals the such as an MRI, and must be checked after being valve. exposed to a strong magnetic field. Spring-Loaded, Ball-in-Cone Valves Multi-Stage Flow-Regulating Valves These valves incorporate a metallic spring that Multi-stage flow-regulating valves combine the applies a calibrated force to a ball, located in a features of an adjustable valve with a variable flow cone-shaped recess. When the force (pressure) restrictor. This allows these valves to drain CSF at of CSF gets high enough, the CSF pushes the a rate close to CSF production. Multi-stage flow- ball against the spring and opens the valve to regulating valves can also adjust to changes in CSF allow the CSF to flow through the tubing. When pressures, such as sudden changes in body position. 3the fluid pressure is reduced, the ball returns to This allows these valves to prevent the over-drainage its original position and closes the valve. Ball- of CSF. in-cone valves are less prone to the effects of aging and are less susceptible to clogging than slit valves.

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Complications of Shunt Procedures Shunt Malfunction Symptoms of a Shunt Malfunction Shunt malfunctions are very serious. It is therefore A shunt malfunction simply means that extremely important to recognize the of a shunt malfunction early. Your child’s the shunt is not performing the way it body will become dependent on the ability of the shunt to drain CSF. When the shunt is no longer should. A shunt’s job is to properly drain working propery, CSF cannot be carried away by the shunt’s tubing, causing the fluid and pressure in the the CSF at a rate equal to which the CSF is brain to build up. You should contact your child’s doctor immediately if you suspect your child’s shunt produced. There are a number of reasons is not functioning properly.

why a shunt may malfunction. The symptoms and signs of a shunt malfunction will depend on the age of your child. In general, shunt malfunction reoccurrences will resemble the The most common reason for a shunt malfunction previous malfunction. On the next page, you will is blockage. Blockage can occur in the shunt’s valve find a table listing the signs of a shunt malfunction or, more commonly, in the shunt’s tubing. The most depending on the age of your child. The most common type of blockage along the shunt’s tubing common signs of a shunt malfuntion resemble the occurs at the shunt’s opening. Cells which line the symptoms of hydrocephalus and include headaches, ventricle naturally regenerate, causing old cells to , , irritability, lethargy, and changes slough off. These sloughed off cells can accumulate in behavior. Your child’s doctor can diagnose a shunt and plug the opening of the shunt, preventing CSF malfuntion using an MRI or CT scan to check for from draining into the shunt. The second most enlarged ventricles or by performing a shunt tap to common site for blockage is at the end of the measure the pressure of CSF. shunt’s tubing where CSF flows out. Since the most commonly used shunt is the ventriculo-peritoneal If your child suffers from a myelomeningocele, there shunt, the end of the tubing is often located in the are additional symptoms that may be present during abdominal cavity. In this region, the end of the shunt a shunt malfunction that are important to recognize. can become blocked by abdominal fat or tissue. In infants, these additional signs may include Your child’s normal growth may also cause a shunt apnea (periods in which the baby stops breathing) to malfunction. As your child grows, the shunt’s or bradycardia (slowed heart rate). In all children, position may change as well. This can result in the additional symptoms may include crossed eyes, an position of either ends of the tubing to no longer inability to look up, difficulty swallowing, a hoarse be positioned correctly to maintain the proper or weak cry/voice, trouble walking, changes in bowel flow and drainage of CSF. Another cause of shunt or bladder patterns, back, neck, or leg pain, and malfunction is disconnection, where one piece of the increased scoliosis (curvature of the spine). shunt disconnects from another portion. For these reasons, most children can expect to have one or It is important to recognize the signs and symptoms two shunt malfunctions. There are, however, a small of a shunt malfunction early and be prepared to number of children who may experience more shunt act quickly. Even hours can mean the difference malfunctions. For example, a premature baby will between a resolvable and long term have a greater chance of requiring a shunt revision damage, such as or even death. If you than an older child. Shunt malfunctions are more suspect a shunt malfunction, call your child’s doctor common during the first year of life. This relates immediately. to the dramatic brain growth that occurs during a child’s first year.

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Common Symptoms of Shunt Malfunction Infants* Toddlers* Children and Adults* • Enlarged head size (increased • Expanded head size (increased • Headaches head circumference) head circumference) • Vomiting • • Firmness or bulging of the Headaches or head-banging • Irritability soft spot (anterior ) • Irritability • when the child is upright and Lethargy • comfortable, not crying or Fevers or vomiting • Swelling or redness along straining • Swelling or redness along the the shunt track shunt track • Dramatic change in the feeding • Visual difficulties or change pattern, often accompanied with • Diminished motor skills or in vision vomiting loss of previously performed • (though not normally functions or skills • Irritability or inconsolability related to shunt malfunction) • Seizures (though not normally • Drowsiness or listlessness • Incoordination or loss of related to shunt malfunction) when the child is usually motor skills • alert or playful Listlessness or lethargy when • Decline in academics, school they are usually awake • Inability to look upward, with a or job performance (this may preference for looking down at be the only symptom) the feet • Change in bowel or bladder • Swelling or redness along the control shunt track • activity (though not normally related to shunt malfunction) • Prominent scalp veins or puffiness around the eyes

* Note: The lists above are for reference purposes only and are not intended to be a diagnostic aid. In the case of any doubt, contact your physician immediately. 11 Shunt Infection Between 10 and 20 percent of children with shunts develop a shunt infection. A shunt infection usually occurs within one month after an operation on the shunt. This operation can be the initial shunt insertion or a shunt revision. Fever, irritability and the same signs of a shunt malfunction often signal a shunt infection. Redness and swelling along the shunt track may also be present during a shunt infection. Though a fever is an important sign of shunt infection and should not be ignored, fevers do not always indicate a shunt infection. If your child develops a fever, you should call your child’s doctor, who will evaluate your child for other sources of infection. The usual cause of the fever is not related to the shunt, but related to common infections seen in children, such as ear infections, urinary tract infections, or the common cold. If there is a clear source of the fever, this is treated first. Raising and Caring for a If the pediatrician is unable to locate the source Child with Hydrocephalus of the fever or if any additional signs of a shunt infection are present, your child’s neurosurgeon will As your child grows and your knowledge of be contacted. Once a shunt infection is confirmed, hydrocephalus increases, you will become more surgery is usually necessary to control the comfortable caring for your child. Although there are infections. many different philosophies, it is important to treat and raise your child as you would a child without a A shunt infection is often diagnosed by obtaining shunt. The child should be given all opportunities CSF through a small needle, which is inserted to excel. If handicaps or delays in development into the shunt reservoir, or by analyzing the fluid exist, the environment should be made such that the obtained at the time of shunt revision. Although child can reach his/her individual potential by setting there are a variety of ways of treating a shunt realistic goals. infection, the most common treatment involves an external ventricular drain (EVD). Usually, your child’s To create this environment for your child, your child shunt tubing will be removed completely, and your will need to be followed throughout development child will be placed on an EVD for approximately two by a pediatric neurosurgeon to evaluate the function weeks. An EVD is similar to a shunt, except instead of the shunt system. The parents and neurosurgeon of draining the spinal fluid back into the body, it should form a team to provide information to each is drained into a collection system at the bedside. other about the child’s progress, such as head During this time, the child is given antibiotics and circumference measurements and testing results. the CSF is sampled until it is free of bacteria. Once In order to keep your child’s “internal environment” the CSF is cleared of the infection, new shunt tubing functioning at its best, you and your child will can be placed. Shunt infections are most common initially need to frequently visit your child’s pediatric in children who require frequent shunt revisions or neurosurgeon. Regular testing and check-ups allow premature babies with a low birth weight. They can, your child’s doctor to properly monitor you child’s however, occur in any child or adult with a shunt and brain growth and shunt function. at any time during the child’s life. Do not hesitate to In order to provide your child with the best care, other contact your child’s doctor if you have a question health care physicians may be a part of your child’s regarding your child’s shunt or suspect your child health care team. A pediatric neuropsychologist has a shunt infection. may monitor your child’s development through 12 neurodevelopmental and cognitive testing. Once the Additional Resources child is of school age, this testing will help facilitate When confronted with a chronic medical appropriate classes or teaching methods to help your condition, it is not uncommon to feel helpless child excel. Other health care professionals who may and overwhelmed. Please know that vital be involved in your child’s health care team include: resources are available to you, such as physical therapists, occupational therapists, pediatric the following: orthopedic surgeons, pediatric neuropthamologists, and pediatric urologists. Your child’s pediatrician Hydrocephalus Association should help coordinate your child’s care and facilitate 4340 East West Highway the process. Suite 905 Bethesda, MD 20814 To provide the best possible environment for your [email protected] child seek therapy and support for each potential http://www.hydroassoc.org concern that may arise. Early intervention programs Tel: 301.202.3811 (888.598.3789) are extremely important for your child’s care. Your Fax: 301.202.3813 child’s pediatrician should coordinate your child’s care and facilitate the process. National Hydrocephalus Foundation 12413 Centralia Road Finding out your child has been diagnosed with Lakewood, CA 90715-1653 hydrocephalus can be an overwhelming experience. [email protected] However, with the therapies and interventions http://nhfonline.org available today, most children with hydrocephalus Tel: 562.924.6666 (888.857.3434) can lead a life with few limitations. Listed to the right are a few of the many local and national agencies Pediatric Hydrocephalus Foundation where you can seek further support and information. 2004 Green Hollow Drive Iselin, NJ 08830 [email protected] Current and http://www.HydrocephalusKids.org Future Research Tel: 732.634.1283 BRAIN Constant advances are being made P.O. Box 5801 Bethesda, MD 20824 in our understanding, treatment, and 800.352.9424 http://www.ninds.nih.gov management of hydrocephalus. Midwest Children’s Center Progressive medical research, 1675 Dempster Street Park Ridge, IL 60068 revolutionary advances in technology, Email: [email protected] 1.855.312.KIDS (1.855.312.5437) and new, exciting innovations are aimed at helping children not only live with this condition, but excel in life. There is a great deal of optimism for children with hydrocephalus. The future is promising.

13 About the authors John R. Ruge, MD, FAANS Dr. John Ruge has an outstanding national reputation as both a pediatric and adult neurosurgeon.

Areas of expertise include complex pediatric and adult brain tumors, spinal tumors, Chiari malformations, and . He has over 20 years of experience in treating children and infants with head-shape or size problems and utilizes a team approach in treating complex . He cares for patients of all ages with hydrocephalus, tethered spinal cords, and head trauma.

Syed Khalid Syed Khalid is a medical student at Chicago Medical School and holds research fellowships at Johns Hopkins School of : Solomon H. Snyder Department of Neuroscience, The Howard Hughes Medical Institute, and Advocate Lutheran General Hospital: Center of Brain and Spine Surgery. He is also an avid inventor and entrepreneur focused on developing innovative and simple solutions to healthcare’s largest problems.

Other notable contributors Brittany Hunter (Content) Vanessa Azra (Medical Illustrations)

14 About Advocate Children’s Hospital

As part of Advocate Health Care, Advocate Children’s Hospital is the largest network provider of pediatric services in Illinois and among the top 10 in the nation. The two main campuses are located in the Chicago metropolitan region – Oak Lawn in the southwest and Park Ridge in the northwest, with additional services accessible at other Advocate hospitals throughout the state. Advocate Children’s Hospital serves as a major referral center for infants and children. Through a special, wholistic approach, Advocate Children’s Hospital combines some of the country’s most respected medical talent with exceptional and compassionate care. In fact, the children’s hospital has been recognized by U.S. News & World Report as one of the nation’s leaders in pediatric cardiology and neonatology, and numerous physicians have been recognized as being among the Top Doctors regionally and nationally in their field. The hospital is staffed by more than 400 pediatricians and 230 pediatric subspecialists, who offer a wide range of specialized services for children.

15 Notes

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Parents’Parents’ GuideGuide toto HydrocephalusHydrocephalus

Syed Khalid • John Ruge, MD, FAANS

1675 Dempster Street || Park Ridge, Illinois 60068 AdvocateChildrensHospital.com

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