Community Discussion Forum Adults and PKU I need advice about my Husband's Phe levels… Reply To: I need advice about my Husband's Phe levels…

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Thanks for all of the help guys!  We have already started him back on the PKU diet.  I cooked my first PKU friendly meal last night and it turned out really well.  I was like a proud parent.  :)

My Husband went to our family doctor this morning and they are working on getting him an appointment with a specialist.  The closest one to us is over three hours away so we will have to take off of work and spend the night.  Our family Dr. went ahead and prescribed him with Kuvan, however, we can't find a pharmacy around here that can even get it.  Not to mention its about $4,000 a month without insurance.  I hope that our insurance covers it.  I will post more when I know more.

Nicole, my husband does have a lot of those symptoms you listed.  I'm very excited about the idea of him being able to function better.  I can't wait until we can get him back on track where he needs to be.

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