Just seeking some info on PKU. My twin nephews guthrie heel ***** test came back positive for PKU. From a bit of googling, I understand this is where the body has trouble breaking down proteins? At the moment, they have to have blood tests every couple of weeks to make sure the levels of a something (can't remember what my brother said) don't go over a certain amount. When they eventually start solids, they will still be monitored and then it will be determined what kind of special diet they need.
Has anyone had any experience with this or know any good info that I can pass on to my brother and SIL?
One of my schoolfriends had it - she had a special diet, but nothing too wild. Same as any other kid with an allergy, I guess. She's a grown up now, and she's OK. That's the best I can do, info wise.
I dont know much about phenylketonuria Im afraid other than what I can google.
There is lots of info out there though and from what I have read it is very manageable.
My Gf has a child with PKU, apart from a special diet he is perfectly fine.
They just can not have anything with alot of protein in it, meat fish chicken, dairy, there is so much they can not have, but you can find alot they can have too,from the general supermarket. They also buy some special food for him from a (o not sure what the place is called now) but it is pretty expensive, however the government does supplement her for the costs.
PKU positive in Guthrie test
Reply With Quote
I hope things are OK for them.
Bookmarks