hey to whoever reads this im carrie n im 18 well in like 17 days but any way just lookin for some people kinda around my age to talk to…actually it doesnt matter who ever wants to can! ive never talked to ne1 whos had or known sum1 who has known sum1 with PKU so i think it will be interesting hearing from people well t2yl hopefully n~*carrie*~
Hi Carrie, nHow are you. I am definitely not “around” your age, but am looking for fell PKUers as well. I had a tough time duing my teens managing the diet. How are you doing?
hey! thanks for replying evntho ur not my age who cares ya no? well i guess im ok now handling my diet of course when i was young my mom took care of it and did a very good job but a few years ago once my mom started letting me deal with it myself i let it slip but now my b/f is helping me do better w/it tho he does not have PKU he understands how important it is 4 me and worries about it.
hope 2 hear back 4rom ya
hey Carrie, nJust saw your profile – pretty cool stuff. And good to know that you have friends who help you with your diet control. The support makes a lot of difference.
yep pretty cool stuff! my friends i think 4get i have it n just think like i dont eat meat n stuff its just mostly my b/f n family who really no but its cool its good not having to explain 2 evry1 y i dont eat meat
sooo has ne1 not stayed on their diet im just curious b/c i guess lately i havnt been on it n was wondering how common it was
I am not really in your age group, but I really struggled with my diet in my teen years. It got so bad when I was 13 that I had 2 siezures in 1 day. Nowadays, I actively participate in a PKU support group that meets in my area. Several adult members of this group are struggling to get back on diet because they were taken off of it since they were 5 or 6 yrs old. Being back on the diet has improved their health in great measures.
Hi Peggysr and Carrie,
I am 40+ and have been on my diet since a very early age. It has done wonders to me and over the years I have created a few recipes with curry that taste awesome.
you said you had two seizures in one day?
why? that is scary to me re: my daughter. she is only 3
where you just eating whatever you wanted? what caused the seizures? where your levels high? thanks.
pkufit i would love to learn some cool recipes..um idk what curry is but trying wont hurt me! hopefully they arnt too compilicated i am definatley not one for cooking…do you ever use the special aprotein brand food for cooking? ive tried it before but its very hard to find places to get it at they are all so far plus it is really expensive!
Carrie, nHi. It’s Anne again. Just saw your questions about Aproten. I just ordered a whole bunch of food from different websites. Cambrooke foods is a really good site and has pretty good food. Also Dietary Specialties (www.dietspec.com) is a good one too. There are quite a few web sites to order from and I think you can find the addresses to most of them at http://www.pkunews.org. Hope that helps. nAnne
rjharr, well, the doctors at the hospital could not pin point what caused my siezures. But later in life, I realized it was diet related. I was 13 years old and rebelling against my diet. I was never completely off diet, but I would eat a lot of french fries in large portions every day. In addition, I would also eat regular pastas and bread and I was not drinking my formula. All I can recommend is as your daughter gets older, encourage her to maintain her diet as best as possible. In my late twenties, I am now on track again and the difference in my learning abilities and my personality is just like night and day. I drink my formula every day and I have limited myself to potatoes at least a couple times a week in smaller portions and I only eat low protein pasta when I want noodles.
k well i never really had a story to tell untill now…all thru my childhood my diet was very well taken care of untill it started to b my own responibility. i just wanted to b normal like all my friends so i went off my diet but mom never knew so it was ok. even my mom stopped taking me to get my blood taken n stopped making me drink my formula. i has been very hard these past few years in school going from straight a’s to having a GPA of like .8, i know my diet was the cause but i just was in denial i never wanted to go to the doctor to b yelled at bc i havnt been loyal to my diet. i have no idea what Phe level im at or if im drinking the right formula..having help from people on this website made me change my life from this day on. this morning i called St.Louis childrens hospital wehre i used to go to find an adult doctor since im turnin 18 who can help me get my life back on track and hopefully help me eat the right foods. i made an appointment this morning for next week so i will see how it goes!
so i no this is really corny n stuff but thank you to all the people who helped me in this forum!
to the person who wanted to know if there was anyone who has been off their diet I can say yes I don’t have pku but my husband does and hasn’t been on his diet for 8 years now and he is doing fine well to the best of my knowledge I am trying to get him to see a specialist and get him back on his diet I just think he might still be a little embarassed by having pku and what people think we dine out a lot and they always try and offer him the special’s and I guess he doesn’t want to embarass himself so he just says yes to the main menu’s instead of asking for the vego dishes and plus I always need a calculator to add his units