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

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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

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