Community Discussion Forum That’s PKU life! Regarding clinics Reply To: Regarding clinics

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Hello everyone. I’m new to this group. And I hope you don’t mind my imput as I see you are all parents of adults with PKU. I am a 31 yr old adult with PKU and never been off of diet. And I can understand what an inconvenience it can be for your children on the distance it is to a PKU treating clinic.
Let me just say from experience……. regular family doctors normally will not treat the pku as they aren’t specialized in its treatment. They certainly know a common knowledge of it but not enough to properly treat it. It would be much better if your children be set up as a patient of a clinic (they are usually at children’s hospitals). If distance is their issue then they can work something out with the dr. and dietician.
As an adult with pku you don’t need to be seen as often as a child. And so long as you are not going to be preparing for pregnancy then getting the bloodwork done doesn’t have to be but maybe 1 a month.
Your children can see if they can go in for an initial appointment which will be worth it so they get set up on their diet plan and formula intake and all that and talk about either having the bloodwork done at home and mailed into the clinic or as some get an order from their pku dr. to have their bloodwork drawn at the local hospital lab and shipped to the clinic and then do as much as possible over the phone in regards to the diet. And just go in the every 6 months to 1 yr that most clinics require of adults. Now if any of your children are girls/women then make sure they use birth control till they decide they want to start thinking about getting pregnant and then the amount the clinic will want to see them and have phe levels taken will be different.
I’ve dealt with the distance thing before in the past and have had my bloodwork taken at my local hospital and shipped to my clinic and then did alot of the stuff of the phone with my dietician till my next appointment. Just giving you all a little advice if the main issue is distance.
But yes them getting back on the diet is the best for them all the way around.
Hope I’ve not butted in and I have been of some help.

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