Hi … i just want to be able to write something down for someone to read and hopefully respond to regarding PKU and been a parent. I’m not the type of person who would do something like this but i feel like i’m not doing enough ! anyway i’ll tell you a bit about myself.
My name is Billy and i am from Ireland (the little green dot on the map beside England). My son William was diagnosed with PKU just after he was born, he is now 12 yrs old …how the years go by so quick. As along with everyone ealse my son goes through the same rotuine each day & month and we try to go through it with him but his mother would be much better at dealing with this than i am.
I just feel really crap about the effort i’ve put in in supporting my son. I’m constantly feeling like i’m not doing enough or no matter what i do it’s not good enough. When my[/FONT] son stays over with me for a couple of day we try out different foods and sample other food stuffs – while i’m constantly aware of protein, levels, exchanges etc.. when he goes back to his mothers and then for his checkup’s i’m hoping is levels are not high and if they are i’m blaming myself?
does anyone ealse feel like this?
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
I am Amanda and I am 19. Im not a parent either but I may be able to help a bit. I was put in my grandmothers care at a young age because my parents had me too young and could not take care of my pku. I finally moved with my mom at 7 and she never knew how to take care of it. My step dad had pushed me to drink the formula and eat right. When he left my mom said that at 15 my brain was developed and the diet didnt matter. For the last 4 years I have not been on the diet or the formula, and I can honestly say I am seeingchanges in myself.. its scary.. Having too high of levels is not a great thing or maybe eating wrong sometime, but I think that by you taking the time to write that you care. It sounds like you have an idea of whats going on with your son. I wouldnt blame yourself. I think you are helping him. My parents never helped me and now Im doing all I can to try and get back on it so I can one day have a healthy family of my own. Hope this helped some… just be there for him.
***I know its gross, but it always made me feel better when my dad would drink some of my formula with me just so he knew how bad it tasted***
Amanda, nThat’s funny that your dad would drink your formula with you. But still that is extrememly sweet that he did that!!
Yea he’s a goof