PKU.com Community Discussion Forum Parent support connection to autoimmune diseases? Reply To: connection to autoimmune diseases?

#6236
Avatar of Breanna
BreaMarie91
Member

Hmm…well I’m not sure if those are symptoms of untreated PKU, but if you think it could be PKU then I would suggest going with your instinct. If she did have PKU, since she is 13 it would have to be a very VERY mild case. Because if it were a serious case of PKU and she wasn’t treated she would most likely be mentally retarded.
If you still think it could be PKU then talk with her regular doctor and see if you could get them to perform the Newborn Screening test down. I know it’s silly seeing as it’s a test for newborns, but that is how PKU is detected. It is simply a prick in the heel (in her case since she is older it would most likely a finger prick…possibly venipuncture) and then some blood on a card. Then they would test to see how much Phenylalanine is in her blood and if the levels come back high then more testing might be needed to determine if she has PKU.
If your regular family doctor doesn’t know where or how you could get this done then you could contact a local clinic that deals with PKU. If you go to http://www.macpad.org and into their links section then the link that says “Clinics” Then there is a list of clinics that treat PKU. You can contact one of them.
I hope this helps you out! nBreanna 16 CPKU

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