Spina Bifida

Multidisciplinary Spina Bifida Clinic (Msa4S)

Information for Parents/Carers

Welcome to the Temple Street Children’s University Hospital’s (TSCUH) Multidisciplinary Spina Bifida Clinic.

The overall goal of this clinic is to help children with Spina Bifida stay healthy, gain independence and become confident in their abilities.

Objectives include: 

  • Completing multidisciplinary reviews throughout your child’s life monitoring overall development and identify medical or therapy needs.
  • To provide information to patients, families and professionals and liaise with service providers assisting children in the community.
  • To assist with goal setting between clinics related to specific Spina Bifida needs and concerns.
  • To co-ordinate care and therefore reduce the overall number of individual visits to the hospital. Where possible we try to co-ordinate as many tests and consultations as possible in the one day. This may involve a period of waiting between morning appointments and afternoon clinic.

 The team adopts a ‘shared care’ approach with your local services and will liaise with your team, it is encouraged that any concerns or issues are brought to the team before clinic where possible.

Who Will I see at the clinic and what are their roles? 

  • Neurosurgeon, Monitors issues related to hydrocephalus, VP shunts, headaches and changes in abilities.
  • Paediatrician, Monitors the medical needs of your child, and growth and development.
  • Bladder and Bowel specialist, Monitors issues related to the bladder and bowel and gaining continence.
  • Physiotherapist, Issues related to muscle tone, mobility level and physical ability. Reviewing positioning, postural management and monitoring orthotic equipment (AFO’s, RGO’s) and stander use
  • Occupational Therapist, Monitors fine motor and upper limb difficulties, visual abilities, school functioning and developmental    difficulties. Advice re positioning and equipment needs.

We recommend the following for your clinic visit:

  • The clinic is busy and may be overwhelming. It may be beneficial to bring a friend or family member to your first visit.
  • Bring a list of questions you want to discuss with you to the clinic. This will save time and speed up each consultation.
  • Remember to bring any splints or callipers your child uses so they can be discussed with your Physio and occupational therapist.

As clinic day can mean a long day away from home for some we recommend the following:

  • Bring snacks and drinks for yourself and your child.
  • Take some books or games to keep your child amused while waiting.
  • Bring as many nappies/pads/catheters you are likely to require as well as a few spare ones.
  • Use public transport if possible to avoid difficulties with parking or consider the all day rate available in some car parks.
  • Children with a range of abilities attend this clinic and their physical and learning needs may differ from your child. Feel free to discuss your child’s potential with the team.

Instructions for clinic visit:  

The following instructions are relevant to your child if they have been ticked.

Bladder Diary                                  

Please complete a bladder diary for your child over a period of three days. This will help us to determine how the bladder is storing urine.

Please fill in all drinks taken and the amount of urine obtained on catheterisation. Let us know if the pad or nappy is wet or dry at the times you do the catheter.

You can use whatever is useful to you measure the urine (Jug, bottle, catheter bag).

Please bring the completed bladder diary with you to the next clinic.

Bloods Forms                               

If your appointment time is prior to 14.00hrs, please check in to the Clinic first and we will send you for bloods at a suitable time. If your appointment is later than 14.00hrs please go directly to Phlebotomy on the ground floor (opening times: 14.00-16.00hrs), and then check into the clinic.

Please find enclosed blood forms for same.

If you have an ultrasound on the same afternoon as the clinic please check into the clinic first .We will send you to ultrasound from there and avoid delays.

We would appreciate if for any reason you are unable to attend your appointment that you notify the nurse co-ordinator as soon as possible. We may then be able to fill that slot at short notice for another child on the waiting list.

You will have 4 individual appointments at the spina bifida clinic and may have to attend for test/scans etc. so please allow 3- 4 hours for this clinic. 

If you have any queries about the TSCUH Multidisciplinary Spina Bifida Clinic please don’t hesitate to contact a member of the team on: 01 – 8784254 (Neurosurgical Secretary)

                      

Spina Bifida Resources

Websites

Books

  • Answering Your Questions about Spina Bifida by Children’s National Medical Centre, Washington DC
  • Children with Spina Bifida: A Parent’s Guide by Marlene Lutkenhoff
  • Living with Spina Bifida: Shared Experiences by Cumberland College
  • Living with Spina Bifida: A Guide for Families and Professionals by Adrian Sandler

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