Community Discussion Forum Parent support New to PKU Reply To: New to PKU

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dayna79 u asked if things got easier as time goes on. I don’t have kids with PKU or have it myself but my 2 nephews do. I know that my sister struggles everyday with the boys. The oldest feels left out all the time seeing the things that he can’t have. I lived with them for 3 1/2 years and it took me awhile to get use to what they can have, how much, how to tell if they had too much Phe… I learned a lot in the time I was with them. I can tell you just by being with them in that time that it probably won’t get any easier but you can prepare yourself the best that you can. My oldest nephew who is 13 has some brain damage due to the fact of him sneaking into foods he shouldn’t be eating. My youngest nephew who is 6 so far hasn’t followed into his footsteps. The only way I see that could make things easier is if you try to make your dinners as close to the kids dinner. Say the kids want spaghetti make spaghetti for everyone else in the family who doesn’t have PKU or the new “hamburgers” they now have. If they want that for dinner then make the rest of the family hamburgers. I know it made the boys feel apart of the family dinner then wondering why they always had something different. My sister and I also let the boys sniff our food that we made…. I guess it helped them and they loved to smell new foods. The boys liked to help us cook or make (depending on what it was) their food so that helps out alot to. Well right now thats about all I can think of but I’m sure more things will come to mind later on.

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