Posted by Sarah
on 8/7/2009, 3:12 pm
78.149.94.46
Hi,
I am so pleased to have found this support network, and I apologise for the long post.
I am desperate for help for my 1 year old neice and would appreciate any advice or support available.
She was diagnosed with PRS at birth and has been tube fed ever since. At first it seemed to work well. However it became apparent that her growth and weight gain has slowed to the point it has virtually stopped. She looks fine in herself, but tiny for her age. She is fed a high calorie formula through a tube, but now after most feeds she is very sick. She appears to be in discomfort,not like when babies "spit up" but more like when they have a proper sickness bug and feel poorly. She is supposed to be fed about 120ml at a time, but only ever gets to about 90ml before she starts coughing and is sick. The neonatal specialist says it is not reflux, but I wondered what anyone thought on here?
She has had hormone tests for the growth problem that have come back clear, and xrays for a bone disorder which also came back clear, but then another specialist said that she is too young for xrays to show anything up yet.
Mentally her develpoment seems fine, she is babbling and attempting to crawl. My sister thinks her bones are causing her some discomfort at times.
The other thing is she is sleeping for 16 to 20 hours a day, and seems to tire very quickly. I was interested to read that others on here have experienced sleep apnoea(sp?), which is interesting.
My family is very worried, especially as after a sickness episode she looks so poorly. The specialist at our local hospital hasn't come across a case like this, and to be perfectly honest my sister is giving up hope now that she will be ok. They have had genetic testing which hasn't shed any light so far.
She has attempted moving to bottle feeding, weaning etc but the child doesn't seem to have the strength. The corrective palate surgery has been put off until she is much stronger.
i am heartened to read on here that many seem to have had feeding, sickness and growth problems too. Has anyone experienced any of this? Has anyone successfully come through it??
I will be extremely grateful for any relpies.