PKU.com Community Discussion Forum New to PKU.com Do endocrinologists specialize in PKU? Reply To: Do endocrinologists specialize in PKU?

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Anonymous

I know that in my area there is an endocrinologist and a dietician that tried working with a family here but after talking to the mother of the PKU'er she told me that they really did'nt know enought about it to properly treat her children. She said they really tried but in the end she was uncomfortable in this situation and knew that her children's health was worth a 6 hour drive to go a metabolic doctor with a specialty in PKU. So we also made that decision to make that drive and to argue with insurance constantly just to get the doctor visit covered because they consider the Dr. out of network. Well duh I know that why would I travel that far for a doctor visit unless it was totally necessary. Insurance people have no compassion or concern for anyone. Our children's health is way too important to mess around with or to put a price on. Hope all of you are doing well.

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