Community Discussion Forum New to PKU Doctors

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    Avatar of Brenda

    I am wondering if anyone can recommend a good doctor. My sister has PKU and right now we are really battling with her levels and her weight. Her doctor wants her levels between 2 to 6. They usually range 6 to 12. It has gotten to the point where we have had Social Services involved for the past year and now the doctor wants her taken away since they are not where he thinks they should be. However, he is not of any help on ideas or ways to help keep her levels down. We have completely eliminated junk foods and stocked up on veggies and fruits along with her low-phe foods, but it is not really working. She is enrolled in a fitness club and goes about 3 times a week. Any suggestions or recommendations? Right now I am not concerned with the location if a good doctor can be found. Thanks!

    Avatar of Breanna

    Go to then go to the links section and click the one that says clinics. That lists all of the clinics in different states. Try contacting a different clinic in your state and see if you can start seeing one of their doctors.
    If your sister is taking in only how much Phe she is allowed, is drinking her formula and is measuring her food then she may just be on to many phes/exchanges (or whatever you count). Try lowering it for maybe a week or two and then do a blood tests, see if that helps. For example if she is allowed 300phes, lower her to 275 for awhile or something like that. If her level does go down then that might be the problem.
    I’m not sure how old your sister is but like I told a parent on here, if you email me at my 8-year-old sister with PKU or myself (depending on how old your sister is) would be happy to talk to her if you think that would help.
    I hope things get straightened out soon! nBreanna n16 CPKU

    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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