Allied to Kids

Page 8 Allied to Kids North ern to Kids Child Health Network Allied Sec (NCHN) ondment Opportunities Rem ember that expression of Issue 4 June 2008 Sonia Hughes intere st forms for Allied Health Allied to Kids will be circulated regularly to provide updates and information to support NCHN Project Officer secondmen allied health professionals who work with children. Allied Health ts need to be sub- mitted Taree Community Health Centre by the 30th June. Allied Health Secondments in GESCHN Phone: 02 6592 9705 If you haven’t received Mob: 0423 823 633 the ex- NSW Child pression of inte Fax: 02 6592 9607 rest form or you Health Network What is a secondment? But I have some questions that need would E-mail: just like more details, c answering faster than that. all A great opportunity for you to visit and [email protected] or email Sonia Hug hes (details learn from your colleagues at SCH (your If you have a tricky case, maybe a ques- provided on this pa Supporting Allied Health ge). tertiary hospital) for 1 or 2 or more days tion via the list server for your own disci- Professionals working with children (up to 5 days). pline will get some suggestions from Inside this issue: your colleagues. If you aren’t on a list, What happens when I am there? subscribe now! 1 You get to visit clinics, observe treat- Allied Health Education & Events . . . Secondments in ments, maybe even see your own client GESCHN while they are in their tertiary hospital. Most importantly, you meet the therapists If you are aware of any educational opportunities or upcoming events that could be advertised in this Specialty of the 2 from your own profession so you know newsletter, please email me with the details ([email protected]). Month: SPINA BI- who is on the end of the telephone now! And telehealth? But importantly the opportunity is to see Loozit 6 The videoconferences are now working Coming up…. the tertiary services so it links to the work well. Therapists provide presentations you do after they are discharged. and there is plenty of opportunity for Education and 7 NSW Child Health Network questions. Your community experience Events Who can go? is also interesting and informative for Inaugural Conference We now have staff employed in PT, OT your colleagues in the tertiary hospitals. Mentoring Workshop and SP (Capacity building positions) who This is a conference for medical specialists, regis- They only see the child in the acute work with the project officer to co-ordinate This workshop is for any paediatric Allied Health Profes- trars, doctors, nurses, community based clinicians, phase. sionals who would like to learn more about the mentor- your visit, based on your learning objec- allied health professionals, executives, managers, tives. They will liaise with you to refine For that reason we are encouraging the ing process. planners, policy makers, educators, researchers, those objectives so you get the most out sites to provide presentations as well as When: 30 June 2008 administrators and all who have the health care of coming to Sydney. participate. Don’t think that your experi- needs of children as their primary focus. ences are not of value to others. Case Where: UDRH Building What does it cost? studies or presentations are useful to When: 2 - 4 September 2008 Tamworth Rural Referral Hospital You will be funded for reasonable accom- many and especially when there are of- Where: Novotel Brighton Beach modation and transport costs. There are ten multidisciplinary issues once a child Dean Street, Tamworth some motels used locally and that invoice is back in the community. Sydney goes straight to the tertiary hospital. If Cost: Free So what do I do? Registration forms and more information available you need to fly or drive to Sydney, you are If you are interested in attending please contact Sonia on the CHN’s websites: reimbursed after the visit. Some people Discuss it with your manager and fill out Hughes ([email protected]). have used it as an opportunity to also an EOI with your learning objectives and www.sch.edu.au/geschn/ catch up with friends and relatives while send to the Project officer. There may on secondment – after hours of course. be some phone calls or emails to your to www.nchn.org.au refine the objectives, and then a mutual Anything else I should know? www.wchn.health.nsw/gov/au date is agreed upon for your visit. We’ve had some expressions of interest The project officer can book your ac- (EOI) for secondments that have not re- commodation (billed to GESCHN) and Travel subsidy is available for sulted in secondments but instead will arrange reimbursement of other rural delegates (requests must be submitted by courses run that have helped even more costs afterwards. There are some therapists. For example a Talipes course the 30th June to access travel subsidy). evaluation forms (naturally) as part of for physios or one for Speech Therapists the project. on paediatric feeding.

Issue 4 Page 2 Page 7 Allied to Kids

Specialty of the month: Spina Bifida (SB) This article overviews therapy management of children nities access to information about spina bifida and Keynote speakers will be Associate Professor and adolescents with spina bifida and targets physio- each child’s particular needs. The therapists at CHW Jacqueline Roberts, University of Canberra and therapists and occupational therapists. are aware that the child with spina bifida may be the Spina Bifida is a congenital neural tube defect which only one the local therapist is treating, or has treated, Associate Professor Verity Bottroff, Head: De- occurs in the first trimester of pregnancy and which and are also aware that local resources are often partment of Disability Studies, School of Medi- affects approximately 1 in 10,000 live births. It is a stretched. Clinic therapists endeavour to disseminate cine, Faculty of Health Sciences, Flinders Univer- complex condition caused by failure of the spinal cord relevant information from hospital visits. This commu- sity. to form correctly. It results in varying degrees of pa- nication occurs using different forms (phone, letter, ralysis of the lower limbs (depending on where the and fax) but has been enhanced by access to email lesion occurs), hydrocephalus with associated learn- and the internet. Videos and photos from therapy vis- This conference will be of interest to teachers, ing difficulties, and incontinence. As it is a permanent its are also used to assist. The treatment required will special educators, allied health professionals, condition, children (and adults) with Spina Bifida re- vary according to the level of the child’s lesion and the quire input from a specialty multi-disciplinary team presence of hydrocephalus but other factors need to psychologists and school executives. (MDT) throughout their lives. be considered such as the family support that can be provided. The treatment goals need to be established For further information and registration form with the family, as therapy is ideally part of the child’s daily programme at home and needs to be manage- and to register on-line, please visit able within the family’s situation e.g. refugee, foster www.cheri.com.au/conferences.html.

care. The involvement of preschools and schools also Please email Kirrilly on [email protected] or

varies. call on 02 9845 0418 if you have any ques- tions. Physiotherapy @ CHW The role of the spina bifida clinic physiotherapist is to The management of spina bifida is very different from provide specialist consultative services to children managing children with cerebral palsy, who make up a and young people with spina bifida. Babies born with large proportion of many paediatric therapists spina bifida and referred to CHW are assessed as caseloads and who, superficially, may seem to have near to birth as possible regarding their muscle similar management issues. There are some similari- strength, muscle tone and musculo-skeletal align- ties with treatment of spinal injured patients but there ment. The initial assessment usually takes place in are also many different issues, for instance children the neonatal intensive or extended care unit. With an- with spina bifida are commonly born with lower limb tenatal diagnosis and early referral to the medical deformities such as talipes equinovarus and develop- team leader, the process of assessing the neonate is mental dysplasia of the hip (DDH).The majority of chil- usually faster and less stressful than previously, as dren with Spina Bifida have the additional complexity the families are educated about each of the team of the learning issues associated with hydrocephalus. member’s roles prior to the birth. The close associa- tion of the therapist with the family continues through- There are 3 paediatric teams in NSW located at the out their childhood and adolescent years. This asso- Autism spectrum disorders (ASD), which includes Autism and Asperger’s syndrome are developmental ciation is important, as even though the condition is Children’s Hospital at Westmead (CHW); John Hunter disorders affecting how a person learns, communicates and makes sense of the world around them. Children’s Hospital (JHCH) and at Sydney Children’s permanent, the developmental requirements need to Hospital (SCH). The spina bifida services are compara- be age appropriate and the environment the child is in ASD are being diagnosed at an increasing rate and the majority of students with ASD are educated in ble but this article is written by and describes the ser- will vary e.g. home, preschool, school, TAFE. Growth mainstream classrooms. Teaching students with ASD can present as a challenge. While there is a vice at CHW. and medical complications will also influence and change the treatment provided. After the initial hospi- range of strategies that can be implemented in educational setting since no one intervention is effec-

tal visits, the therapist will see the child and family in tive for all students with ASD and not all strategies are successful. As CHW is a tertiary referral centre, an essential part the clinic at medical visits; organize individual treat- of the therapist’s role is to liaise with local services to ment sessions for serial casting or training for use of allow them to provide optimal care for children and orthoses; or complete developmental assessments. The conference aims to help “make sense” of autism and of the strategies that succeed! Presenta- adolescents with spina bifida. Due to the complexity of The physiotherapist and the rest of the team are also tions will focus on the identification and diagnosis of ASD, associated mental health and social issues the spina bifida condition and changing treatment op- involved in transition to adult services and improving such as bullying, and adolescents’ sexuality. In addition, an emphasis is placed on identifying the tions, for example new surgical procedures, equip- the availability of these services. Each family is pro- ment and research, it is important to provide the local vided with contact details for the clinic should they needs of the student to guide the selection of appropriate interventions. Information on evidence therapists, teachers, teachers’ assistants and commu- have any concerns or queries. based interventions that succeed will also be presented.

Issue 4 Page 6 Issue 4 Page 3 Sensation: altered weight bearing and sensation, a child may Group sessions will include fun games and an op- One of the significant differences in treating children develop a pressure area or an ulcer in the lower portunity to get to know other young people with (or adults) with Spina Bifida, compared with other limb. similar concerns. congenital disorders is the need to educate the child, The physiotherapist will treat this in conjunction with family and carers (teachers and teacher’s assistant) the CNC and medical team leader, using total contact Group sessions empower young people with skills, about loss of sensation including temperature and casting to expedite healing. Total contact casting is knowledge and confidence to get more fun out of proprioception. Loss of sensation impacts greatly on the application of a cast which has minimal but care- life! children’s treatment and long term outcome of mobil- fully and adequately applied padding. The casts may ity. Education about loss of sensation also assists in be changed weekly or less frequently depending on Together, the young people look at self-esteem, the preservation of skin integrity, joint integrity and access to the clinic and speed of healing. setting goals, becoming more active, healthy eating the timely and appropriate treatment of fractures and Free adolescent weight management and dealing with stress. infection. Burns are common from hot seatbelt buck- Any plaster should be applied with particular attention service les in summer, hot water bottles in winter and hot to padding as the plaster itself can cause skin prob- Parents are also invited to attend separate ses- baths. Skin breakdown can be caused by walking lems. If unsure contact the clinic for advice. Prof Louise Baur, A/Prof Kate Steinbeck, Dr sions with other parents. without footwear, foreign bodies and getting into / out Scoliosis: Smita Shah and Dr Michael Kohn are leading the of swimming pools without protection. Reef shoes are Further information and interviews with young peo- Many children with spina bifida will LOOZIT® adolescent weight management ple who have completed previous sessions can be helpful for those swimming or going to the beach. Footwear should be used when mobilising (both in have or develop a curvature of the study. This study provides young people and their found at our website: and out of wheelchair) to prevent this. Through ex- spine such as scoliosis, lordosis, and parent/s access to a free weight management kyphosis with growth; particularly dur- service. perience we have found the compliance with this is better if introduced early rather than in adolescence ing the rapid growth of puberty .This progression is not prevented by posi- Young people who are overweight or mildly obese or early adulthood. aged 13-16 years will be randomised to one of 2 tioning. Orthopaedic Issues relevant to physiotherapy man- group-based interventions: (i) a recommended-care The physiotherapists work closely with the occupa- agement: healthy eating and activity program or (ii) the same tional therapist to make joint decisions re interven- healthy eating and activity program plus additional Congenital Lower limb Deformities: tions/therapy and equipment based on best practice. therapeutic contact via email, SMS and telephone. Children with SB present with a variety of orthopaedic issues including talipes equinovarus (TEV) / Occupational Therapy @ CHW For both groups, adolescents' parent/s will also at- calcanovalgus (TCV) and developmental hip dysplasia tend separate group sessions on healthy active (DDH). A variety of treatment measures are used in- Occupational therapy input generally starts at the living for the family. The program is currently un- cluding modified Ponseti casting (a form of serial child’s first developmental assessment which is be- derway with 14 groups of young people. casting/see references for more detail) and Pavlik tween 4 and 6 months depending on how compli- cated the post neonatal neurosurgery period has harness for DDH. Recruitment has commenced again for more Carmel Blayden been. Further developmental assessments occur at groups to start the week of 21st July 2008. WCHN Allied Health Hip Dislocation: the clinic visits at approximately 12mths; 2½ yrs and Project Officer Children with spina bifida may not initially present 3½yrs. If the child has hydrocephalus an additional Please do not let your patients miss this opportu- developmental assessment 6 months prior to com- Phone: 02 63638121 with hip dislocation but it is common sequelae due to nity. For more details or referrals please contact mencing Kindergarten is completed, so that a full re- Mob: 04 34568227 lack of muscle strength or imbalance around the joint. Kristy McGregor, Research Dietitian, Children’s port can be submitted to the school regarding support Fax: 02 63 933364 Treatment in spina bifida is different to hip dislocation Hospital at Westmead on (02) 9845 1224 or issues for gross motor; fine motor; learning issues; E-mail: [email protected] in cerebral palsy. In spina bifida hips are rarely relo- email: [email protected] cated due to poor surgical outcome and high recur- catheterisation / toileting etc. School access needs essionals Working with Children Working essionals to be considered at least 18months prior to com- Further details of the program are as follows: rence rate. Each child’s hips are assessed and moni- tored at their clinic visits and parents and carers are mencing school, if modifications are likely to be re- Loozit® weight management study for young educated about monitoring hips. quired. people aged 13-16 years Fractures and Wounds: Conducted at the Pennant Hills Community Health In addition to developmental assessments, other as- t Children with spina bifida may present to a physio- Centre, 5 Fischer Rd, Pennant Hills, the Hills Com- abou pects of the OT role include:- tails therapist with swelling or redness of a joint or bone e de tion munity Health Centre, Excelsior Ave, Castle Hill mor orma (most frequently the tibia or femur) with no memora- For e inf ws- ♦ Mobility and other specialized equipment assess- of th s ne ble history of a significant injury and no obvious open and at Summer Hill Community Centre, 131 Smith any n thi e ments ed i hav St, Summer Hill in school term 3, 2008. clud you wound. Often infection or cellulitis is diagnosed. A in or if you tter, hat differential diagnosis of fracture should always be ♦ Pressure care equipment assessment and provi- le ing t in a Nine weekly group meetings in the late afternoon meth ded so inclu se considered because children with spina bifida can sion like plea followed by some reunions over the following ould ion, have fracture with no pain due to absent or impaired w edit ♦ Teaching transfers from wheelchair to change months. uture sensation. An x-ray is useful to confirm this diagnosis. f table / toilet / bed etc If unsure then contact the SB clinic that the child at- First meeting during the week of 21st July, 2008. tends to find out the optimal course of treatment e.g. ♦ School and home visits attending clinic or local treatment options. Due to Supporting Allied Health Prof

Issue 4 Page 4 Issue 4 Page 5 Wheelchairs: Taking the pressure off: Manual wheelchairs need to be light The concept of absent or impaired sensation and pro- If you have any specific questions or would like to Resources: weight, manoeuverable, fixed framed prioception are difficult to appreciate. We, therefore, share information regarding a child with spina bifida when ever possible, and individual- encourage the children to be aware of looking after who attends the SBC at CHW, please contact us. For Pressure Care: ised to meet the specific needs of their skin from an early age through teaching the chil- children who attend the other two clinics please con- Chart: “Push ups / Bottom Lifts” & “Taking the Pressure the child. Fixed frames are preferred dren to complete bottom lifts in their wheelchair on a tact the relevant SBC. Off” available through the CHW SBC because they are more stable and regular basis, and doing exercises to build up their “Think Skin & Grin”: http://www.asbha.org.au/ manoeuverable upper body strength (see list of resources). For chil- SpinaBifidaandHydrocephalus.htm Cushions: As children with spina bifida do not like dren who are able to follow the steps of an activity by change we now prescribe a cushion with the first looking at a pictorial chart, photographs are taken of Learning wheelchair so that with adolescence, when pressure the child and these are used to create a step by step Spina Bifida Clinic “Super Strategies for Successful Students” CD is available care is often an issue, the young person will simply instruction sheet to assist the family / teacher’s assis- The Children’s Hospital at Westmead through Kids Health, CHW. http://www.chw.edu.au/ Locked Bag 4001 continue to use a cushion and not store it in the cup- tant to practise the skill with the child on a daily basis. parents/kidshealth/ WESTMEAD, NSW 2145 board! When considering pressure cushions we en- Phone: 02 9845 3369 Wheelchairs deavour to find a cushion that not only meets the Fax: 02 9845 3585 “Armed for life – Wheelchair set up and Transfers” pressure care needs of the child, (including accommo- www.paraquad.org.au dating dislocated hip/s as required) but also one that Sarah Donaldson & Alison Jones “Recipe for a Wheelchair Prescription: Spina Bifida in the gives stability and is easy to clean and maintain. A Suzie Taylor Occupational Therapist new Millennia” by Gloria Leibel B.Sc PT; Linda J Patrick second cover is recommended for hygiene and social Physiotherapists B.Sc PT. Bloorview MacMillan Children’s Centre 2002. reasons. Learning: E-Mail: [email protected] Transfers: If the child is unable to stand to get in / out Although most children with spina bifida and associ- [email protected] http://www.seatingandmobility.ca/ISS2002/ ated hydrocephalus have intelligence within the aver- ToSunnyHill2/ of a wheelchair OR if this skill will not continue long- [email protected] term we suggest removable clothes guards and teach- age range, many have learning issues very compara- iss2002html/036_RecipeforaWheelchairPrescription.htm ing the skill of being able to move along a surface ble to the issues associated with children with ac- “There was no published evidence (Levels 1 to 4) that from side to side from an early age, as a precursor to quired brain injury. Dr Angela Wilson, a special edu- lightweight, manoeuvrable, individualised manual wheel- the child being able to transfer sideways. The child cation teacher, with input from OT students and the chairs reduce shoulder pain/injuries in people with spina moves their bottom through a push up / bottom lift SBC, has created a resource CD entitled “Super bifida, who use a manual wheelchair as their main form of and then lifts and moves their legs. Wearing trousers Strategies for Successful Students”. The CD contains mobility”: http://www.otcats.com/topics/a_jones.html information and resources to assist parents and helps this latter manoeuvre. Transfer Slide cloth. This Spina Bifida Clinic Upper limb strengthening and care teachers when teaching these children skills both at is a circular tube of cloth with slippery / parachute John Hunter Children’s Hospital “Activities to encourage Upper Body Strength” - available school and at home. The CD has an index which is material on the inside. It is fabricated to the length through the CHW SBC and width required for the child to assist them to the most useful way of locating the required informa- Locked Bag 1 build up their confidence with transfers from the tion. The CD is also a useful resource for therapists Hunter Region MC, NSW 2310 “Armed for Life – Strategies for upper limb preservation in wheelchair over the wheel to bed, toilet or school who may use the strategies in their therapy sessions. Phone: 02 4921 3000 daily activities following SCI” – www.paraquad.org.au chair. On school visits we are often asked whether the stu- Fax: 02 4921 3599 “Preservation of Upper Limb Function Following Spinal dent is “lazy”. Children with spina bifida are not Cord Injury: A Clinical Practice Guideline for Health-Care Backs in Chairs: Even though many of these children Professionals” April 2005 - ISBN: 0-929819-17-9 with spina bifida develop scoliosis, use of a special- lazy. They expend significant energy moving around ised posture back does not change the progress of whether it is through walking or wheeling a wheel- Exercises / Sport scoliosis. As the SBC aims to maximise functional chair. This, plus the difficulties they have in concen- trating; organising their thoughts etc creates mental Exercises for Children and Adults with Neurological Condi- mobility we do not advocate high or specialised tions backs, lateral supports or armrests. These impede the fatigue. We suggest strategies such as recommend- child’s ability to move the wheelchair with a smooth ing reduced number of examples to complete, reduc- http://www.physiotherapyexercises.com.au ing the number of parts to an instruction, pictorial elliptical arm movement, and create barriers to trans- Spina Bifida Clinic Inclusion in School Sport charts when learning self care tasks, sitting where fers. Sydney Children’s Hospital there are minimal distractions; a small pencil case http://www.catalogue.ausport.gov.au Width: is kept to a minimum especially if the chair has with only the items required for the class; colour High Street “Teens on the Move” http://www.ncpd.org & is available the facility of being resized, to again assist the child to coded exercise books; instructions with pictures on Randwick NSW 2031 on loan from the Library, Northcott Ph: 02 9890 0100 easily wheel the chair. If the child wears a reciprocat- how to plan and complete an essay / project; use of Phone: 02 93 831111 ing gait orthosis for the majority of the day, extra seat “Be Active with Spina Bifida”:- http://www.chw.edu.au/ social stories, as well as using the CD as described Fax: 02 9382 1580 parents/factsheets/be_active_with_spina_bifida.htm width will be required. above. Our aim as therapists is to work within the Seat: Seat rake with the front of the seat higher than MDT to maximize the functional independence of the Debbie Daley & Ponseti Casting Sue Sims the back, plus a shallow hollowed out section in the child and adolescent with spina bifida and their inte- http://www.chw.edu.au/prof/services/clubfoot gration into, and access to, the community. The mul- Physiotherapists back of the cushion, encourages the child to sit with their bottom well into the back of the chair and gives tidisciplinary nature of the SBC enables each team Other member to brainstorm with relevant others when ad- Leslie Wollin the child a secure sitting position. Occupational Therapist Australian SB & Hydrocephalus Association: http:// dressing complex issue/s in order to find the best www.asbha.org.au/StateContacts.htm Seat belts and anti-tip bars are required for possible options and solutions. Communication is in- Body Owners Manual” Glenrose Adolescent Services: school. Whenever possible, we advocate for the child tegral to this. to transfer from their chair to the seat of school trans- http://www.adolescentservices.net/ port so that a removable head rest is then not re- spinabifidarelatedlinks.htm quired.