Spina Bifida Family Support
"Families Helping Families"
Developed by the International Federation for Spina Bifida and Hydrocephalus (www.ifglobal.org)
1. Follow up of Spina Bifida patients at District Level
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.
Check if on prophylaxis or meant to be doing clean intermittent catheterisation
Check total skin, esp. in lower limbs for sores
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
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
At least 4 weeks before conceiving
At least 0.5 mg/day.
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 12th 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.
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