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Hey Peggy, I personally would think before going on any special diet you should probably check with a doctor (besides the one who refuses to test you of course). Mainly because your body still needs protein wither it turns out you have PKU or not. The difference is if you have PKU you take a supplement (commonly in the form of a formula) to get protein, minus Phenylalanine which is the ‘bad’ amino acid that those with PKU can’t have.
The only thing that makes me wonder if this is PKU is what I read in your profile. You said you have a daughter and in many cases when women with PKU have children and are not on the diet their children suffer from various problems like mental retardation, microcephaly (small head), congenital heart defects and sometimes the women can even have miscarriages. Also, those who have PKU and aren’t diagnosed young tend to have massive problems (one being siezures like you said), but also serious learning problems and possible mental retardation.
Please don’t get me wrong, I’m completely willing to help and I’m not doubting you or anything! Wither it is PKU, some other diagnosis or nothing at all I’ll help in anyway I can, but I just wanted to give you a little bit more info on undiagnosed PKU/being off diet. So if you have any specific questions regarding the diet I’ll be more then happy to help. (By the way that’s so cool that you’ve ridden horses!). nBreanna 16 with CPKU

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