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 so much Breanna!  My husband's regular Dr. prescribed him Kuvan so that he could go ahead and begin it while he was waiting to get an appointment with the specialist.  We ran into the problem you were referring to – no one around here can get the medicine.  So we had the Dr's office call around as well and they found a Walgreens about 30 minutes from us, a place we travel to often so it really isn't out of the way, that can get it.  I just hope our insurance will cover it.  Our co-pay will be extremely cheap if they do cover it.  I have also been reading about the programs you listed.  It's really good to know that they have something we can go to incase our insurance will not pay for it.  Thanks again for the additional advice.  If you think of anything else, please send it my way :).  I also have a question.  Is there a way to know how many grams of protein my husband can have a day?  Or is it based entirely on the PHE in everything?  I'm just trying to figure out what he can have until we go to the specialist.  Do you have any snack ideas?  Also, the low protein pastas and rice have to be ordered.  Is it good?  Worth it?  I also found a PKU friendly recipe that called for wheat starch.  I can't find a store anywhere that carries it.  Have you ever heard of it and is it something you have to special order as well?

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