Spina Bifida Family Support

www.spinabifidasupport.com

Developed by the International Federation for Spina Bifida and Hydrocephalus (www.ifglobal.org)

Spina Bifida Workgroups

1.   Follow up of Spina Bifida patients at District Level

   ? Development of Hydrocephalus

• Convulsions

• Bulging of the fontanelles, increasing headcircumference

• Ask for other signs of raised ICP.

• Measure the HC monthly in children less than 6 months and stable, 2 monthly in older children. Monthly measurements necessary after closure of the back.

          ? Urological problems

• Check for urinary tract infections at times of fever and in between

• Check if on prophylaxis or meant to be doing clean intermittent catheterisation

           ?  Pressure Sores

• Remove braces

• Check total skin, esp. in lower limbs for sores

            ?  Constipation

Teach mothers how to empty bowel every day at the same time eg. 30 mins after a meal.

Encourage teaching on good eating eg fruit, drinking plenty and activity to decrease constipation.

Enemas if necessary.

2.   When to refer patients with Spina Bifida

All children with spina bifida should be referred early ( after the first visit ) for the treatment of club feet if present, urological assessment ( including renal ultrasound) and assessment of the skin covering the back. Refer to the nearest centre able to manage these things.

Other reasons for referral:

•          Head circumference increasing rapidly

•          If child has a shunt and you suspect shunt blockage

•          If suspect shunt infection

•          If spina bifida is increasing in size and the skin is becoming very thin, therefore, in danger of rupture.

•          If the open back is infected and you suspect meningitis

•          If the child presents with an inspiritory stridor, think of the Arnold Chiari Malformation and refer the child most  urgently.These children need shunts or shunt revision urgently.

•          If the child loses previously gained milestones

•          If there are repeated urinary tract infections and the child is not on catheter treatment or prophylaxis

3.   Who gets Folic Acid Prophylaxis

• Any woman who is planning a pregnancy would benefit from Folic Acid increments.

• Any woman at risk of delivering a child with spina bifida therefore

• Those with a family history of spina bifida/spina bifida occulta in husband or themselves

• Those whom already have a child with spina bifida

• Those women on sodium valproate or phenytoin for epilepsy

When to give

• At least 4 weeks before conceiving

Dose

• At least 0.5 mg/day.

Duration

• Until the end of the first trimester

But it does no harm to continue until the end of pregnancy

These Guidelines were prepared by the participants of the 12^th CPEP-Seminar at KCMC, September 2000 under coordination of Dr  M. Oneko, c/o KCMC, Paediatric Department and Dr M. Nicol, CCBRT, Dar es Salaam.

Back to Main