Anyone with experience of hydrocephalus and gastrostomys.

[wigclan]

i have a friend with a 4 year old boy who has had a vp shunt from birth and has had a gastrostomy fitted last week, she is coping with the gravity feeds he needs, but is finding it all a little overwhelming, and would love to here other experiences and advice if there is anyone out there that has delt with a similar thing.

My dd has a gastostomy since the age of 2,shes now 13 ,she always protests at every feed,mind you the feeds are every two hours and then she gags after every one,although she cant be sick,shes had surgery to prevent this.Its a way of life for us and it doesnt bother me now,the tube feeds keep her alive.

My friends ds had a brain haemorage at birth which caused water on the brain and damaged the thirst centre and he now becomes dangerously dehydrated with a high sodium level (206)was what it was 3 weeks ago resulting in the gastrostomy, she's having trouble getting her head around it all. If you don't mind can i ask the reason for your dd's gastrostomy, no worries if you'd prefer not to say.

MY dd has a rare chromosomal abnormalitie which has caused many problems for her ;heart defects,kidneyproblems,severe gastric reflux,i could go on.She has not fed at all since the age of 2 months.She does have severe developmental delay but ther is no physial reason for her not to feed,she just wont.

Ps, love to your friend, i know how overwhelming it can be at first.

Thankyou so much for replying, she is sitting with me now and had got to the point where she thought she was the only one in this situation, it has been a comfort to her to know there is people out there going through similar things that can give her some advice she says anymore in the future more than welcome Best wishes from us both to you and your family x