PKU.com Community Discussion Forum Parent support Just wanted to talk… Reply To: Just wanted to talk…

#6041
Avatar of Breanna
BreaMarie91
Member

Billy, nFirst off I’m not a parent, but I’m acouple years older then your son (16) and I do have PKU. I think if your taking the time to write about this and get some input from others, then in my opinion your a great parent! If you didn’t care then you most likely wouldn’t be spending time writing and waiting for replies right?
I guess the most I think you can really do for your son is support him. There are soooooo many ways you can support him and some are just so simple as listening when he talks or going along to appointments. That’s great that you already try new foods when he’s at your house. Keep doing that, I know that atleast for me it is so much easier to follow the diet when I have access to alot of low protein foods.
If his levels are high, I really don’t think fingers should point at anybody because their are so many things that can contribute to high phe levels. If he was: sick, stressed, more active then usual, didn’t drink as much formula as he should have on accident, miss-measured food/ate something without realizing how much phe was in it these can all play a role in a phe level and nobody is to blame. All you can really do is help him to lower them as soon as you can.
Just continue doing what your doing! And if you get hit with an obstacle like a higher phe level, don’t beat yourself up about it. The main concern is to lower the level not worry about whose fault it is! Write to me anytime you want, I hope this helped alittle bit! nBreanna n16 w/CPKU

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