PKU.com Community Discussion Forum New to PKU.com I’m Peggy, age 47 Reply To: I’m Peggy, age 47

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Anne Mc
Member

Dear Peggy, nThank you so musch for posting your story. I found it fascinating. Im afraid I cant really advise you on how to deal with the medical profession who would be your first port of call . nHave you actually suggested PKu to them as a possible daignosis. Im sure a simple blood test will confirm your suspicions.
I help look after a man with PKU who was untreated (for about 7years that we know of) who had previuosly resided in a large hospital for people with learning/intellectual disablity.We know nothing of his medical past except that he has PKu .No info as to past diets or past interventions.
Neither do we have info about his family except that he was cared for by his mum until her death. nBefore dstarting on his new diet he always appeared to be moody but because of his low intellect and communication problems we were never able to identify what was wrong. He also looked like he was in some typoe of pain but again we were unable to identify this for sure.I prsonally suspected headaches but that was only a guess. Since going on the diet he is a new man.He appears to have more energy.looks like he is enjoying life and his much more communicative boyj verbally and non verbally.
I would guess that if your dad had pale skin and as you indicated had some learning problems then maybe you should point this out to your Dr and try to get hold of a dietician and and a specialist in PKu,even if you initially have to go through childrens services to do this.
I wish you all th luck and love in the world and hope you eventually reach a successful conclusion, nAnne

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