My son is 19 years old and has PKU. He’s is not severe and never needed a special diet, but of course, we were told he should never have anything made with phenylalanine. He never has, in his 19 years, but two weeks ago he saw a new gum from Trident that said made with XYLITOL and he assumed it didn’t have aspartame. He ate three packs ( approx. 60 small pieces ) in the space of ten days. About a week into chewing the gum, he was complaining of having difficulty getting out of bed in the morning….of being really tired…unusually tired…He seems to feel better as the day goes on but still has the severe tiredness in the AM. nDoes anyone know if the gum could have caused this? Of course he threw it all away once we found out he shouldn’t have it…Also, I’m very concerned that the amount of gum he chewed could have caused damage to his brain…Do I need to worry and is there anything I can do? nHe’s been off the gum for over a week and half now but still experiencing he extreme tiredness. nPlease help….I’m very worried. He is not with me, he is living with his father for the summer. We don’t have a DR. who monitors his PKU as we were told he didn’t need it to be watched. thanks
Hey, I’m not sure if the gum could have caused it and Idon’t know how much phe is actually in a piece of gum. All I know from personal experience is that I’ve chewed a couple of pieces of gum in a day before and never had a problem. I guess two or three pieces of gum for me is equivilent to your son eating 6 or 7 pieces of gum a day because I’m on a very limited diet. Have you guys ever had to do blood tests in the past? Maybe it’s time he has one done because as people grow their phe tolerance can change, so who knows maybe he might need a restricted diet now. Who knows, it could be something as simple as him being sick or something.
Thanks for the info. After his first year life, the Dr’s said that his level would not change and there was no need for any kind of follow-up. I did not know one’s levels could change as you get older. nBut I will have him tested again. I think his levels hovered around a n6 or 7 if I remember correctly. When he was 14 or 15 years old we checked again and it was still in the 6-7 range. What is the acceptable limit now? Before any dietary restrictions are needed? thanks again.
Phe levels are supposed to be between 2-6mg/dl, so I understand with him being so close to that why they would say he doesn’t need a low protein diet. I’m sure he still won’t need the restricted diet, but I know when I was about 14 and finally went threw a grown spurt my tolerance increased by 150 mg of phe, but when I was done growing it went back down. So it can change a little bit. nBreanna 17 CPKU
I am 19 and get my blood tested every few months. There certainly needs to be follow ups with a nutritionist and with blood tests to make sure everything is ok. Your levels change from day to day and month to month. When I was younger they used to be around 16 one month and 5 the next. It all depends on what you eat. There is an extremely slim chance that gum caused his fatigue, make sure you have him checked out. Not even by a PKU doctor but by a regular one too, make sure nothing more severe is going on. Best of luck. Meaghan-19 with CPKU
Hi there, nJust a little info if your son likes to chew gum have him try Orbit it is sugared with Alcohol, and he can chew as much as he wants with no worries. Just look at ingredients first some are sweetened with something else. Just a chew for thought. LOL Tracie