Community Discussion Forum New to New to Pku Reply To: New to Pku

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Hi, nWhat was the level (should be a number) of his PHE test? Normal is between 2 and 6. Perhaps your son’s test was very slightly elevated. When my son was 2 days old his level was 8. When the test result came in our son was just over a week. Our doctor had us go to the PKU Clinic in Minneapolis, Minnesota, that day. When we got there they tested him again and his level was up to 35.
Is your doctor referring you to a PKU Clinic or another family doctor? My gut instinct would be to call your doctor and insist that he make arrangements for your son to be seen at the nearest PKU Clinic immediately. I’m not saying this to frighten you. With the right diet your son will be perfectly fine. Easton is now 11 months old and healthy and happy in every way. But this is a serious situation and more immediate action may be needed than your doctor is providing. Where are you located (if you don’t mind sharing)? Perhaps there is a PKU Clinic nearby. nPLEASE let me know how things turn out!

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