PKU

meganschneider

My son is 5 months old as of yesterday, and at 2 weeks he was diagnosed with Classic PKU. All babies are screened for this as a newborn. Does anyone out there know anyone with phenlyketonuria, or have children with it? This is a rare disorder that affects baby's metabolism and diet. Children and adults with PKU have to eat low protein (not even 1g of protein a day, we're talking mg), and have to eat vegan, no dairy, nuts, meat, artificial sweeteners, and no aspartame. He is on a mixture of a medical and soy formula. I would like to find someone out there who deals with this or another metabolic disorder.  

realisticdreams

meganschneider:

My son is 5 months old as of yesterday, and at 2 weeks he was diagnosed with Classic PKU. All babies are screened for this as a newborn. Does anyone out there know anyone with phenlyketonuria, or have children with it? This is a rare disorder that affects baby's metabolism and diet. Children and adults with PKU have to eat low protein (not even 1g of protein a day, we're talking mg), and have to eat vegan, no dairy, nuts, meat, artificial sweeteners, and no aspartame. He is on a mixture of a medical and soy formula. I would like to find someone out there who deals with this or another metabolic disorder.  

I'm sure if you google their will be a forum dedicated to PKU problems.  That being said, my aunt's sister has PKU.  I know that she was on the strict diet, etc.  I think at one point, as an adult she started straying away from the diet but is now back on it.  She's in her 30's and fairly healthy.  

Good luck. 

momtoo4

DD was diagonsed thru her newborn screen with MCAD it is also a fatty oxidation disorder.

There is a Fb group that has been great support for me FOD (Fatty Oxidation Disorders) Family Support Group.

LeslieD2011

Hello! My 6 month old daughter was diagnosed with PKU at 1 week old. She is on Periflex and I am breastfeeding as well as starting her on baby food with 0 or less than 1g Protein within the last month. She is also on Kuvan--which has been a tremendous blessing. At one week old, she was originally diagnosed with Classic PKU, but after months of careful monitoring  and a series of adjustments to her diet, her diagnosis was downgraded to Hyper-Phe. There are still a lot of adjustments and she has to have bloodwork done every week. It can be overwhelming and frustrating at times having to check with the Dietician before giving her certain foods, etc, BUT whatever we have to do to make sure her needs are met is more than worth it. Hang in there!!