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can any one provide advice

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Old 01-20-2009, 06:10 PM   #1
Join Date: Jan 2009
Location: liverpool
Posts: 1
pd100 HB User
can any one provide advice

My eight month old grandson had an ilostomy at 3 weeks old, initially it was thought he had Hirschsprung's disease, but tests proved negative.
He spent most of his first 11 weeks in hospital.
Following the ilostomty recycling began; however this was unsuccessful and doctors decided to stop the recycling.
At 3 months old he was diagnosied that he does not absorb nutrients.
He has progressed to solids and has a special formula of milk; however he is constantly in hospital for 2 weeks to be stabilised then home for about 1 week. He is well below the weight for his age. He was not premature and weighed apprximately 8.2 at birth. He was born by c section at 39 weeks, due to problems in the pregnancy my daughter had numerous scans but non revealed his problem.
Doctors now want to perform a procedure to give him a peg for feeding, although they do not know if it will work; at present he has a central line and is often fed TPN.
He is such a happy little baby ; however as there is no diagnosis for his illness it is becomeng more frustrating for the family especially his 5 year old brother , who has had to adapt to his mum and dad being permantely at hospital.
If anyone has been aware of any other baby having similar symptons or can provide any advice we would be most grateful.

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