Community Discussion Forum New to PKU Doctors Reply To: PKU Doctors

Avatar of charlotte

hi brenna I am in a similar situation myself, my daughters recent blood levels have been high, around 900, we have now increased her amino acid supplement, thus being pku gel to one extra a day and this has dramatically decreased her levels, the one done just a few days later being 625, My daughter is 8 years old and i am also trying to get her more involved in administering her own diet to stress the importance, she is addicted to crisps, for example and has done a full week without any, with zero fuss! With regard to your sisters doctor i would find another one straight away if your not happy, in my experience, with us being from south wales and my daughter being the first pku child to be born at the local hospital, i have found that some doctors are to ignorant to research the condition before jumping to conclusions, I have found better support from my daughters dietician, hope this helps, good luck! P.s if you are from the uk i can recomend an excellent consultant and dietician in south wales, let me know.

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