Community Discussion Forum Adults and PKU I dont get it

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    Avatar of Osgood

    Here is my story. I am 28. I fully understand the complications due to high blood phes. I have one the lowest tollerancy levels I know 15 exchanges a day or 5g of protien.
    I was excited when for the first time in ten years I got my blood level under 15! It is very hard to manage my line of work (wedding planner) and my travels with the diet, but I guess it would be easier to stick to IF I HAD ANY OF THE SYMPTOMS PEOPLE TALK ABOUT!!!! I have an extremely high IQ ~ always have. I don’t have panic attacks, loss of concentration, mood disorders…I mean what is going on? Ok SO maybe I’m lucky? But really growing up with the other kids in my progam here in AZ~ I had the lowet tolerancy of all of them!!! How do you get motivated??
    I grew up when pregnancy by a pku mom was just about forbidden. I was told at 12 that to have a healthy baby I would have to adopt. Do you know how many pku moms I know who HAVE ADOPTED! Then come to find out its really only crazy restricted your first trimester! Maybe I am just rambling but I am really curious to see if there is anyone out there who shares this experience…[/FONT]

    Avatar of Missy

    Hi there. I saw your post and thought I would reply really fast as I don’t have much time. Got so much to do while my daughter sleeps. I am 33 yrs old and am classical PKU. I also can only have 225 mg of phe a day (15 exchanges…. I count the actual mg of food that I eat.. much more accurate especially with my not being allowed very many and just the slightest off messes with my levels). The diet does take up alot of time. The easiest way I have found to be sure to keep my phe levels down in range and get enough to eat is eating low protein food products with every meal and a little fruits and veggies. I make sure I always have low protein pasta stocked up as they are low in phe and I can use my daily phe more for veggies which I will go crazy if I couldn’t have. As far as having kids…… As long as your levels are between 2-6 mg/dl you and baby should be fine. And yes the diet is strictest during the first trimester. After about the first 2or 3 months of pregnancy as the baby grows your needs for more calories and phe goes up cuz of the baby and the diet gets much easier. I was actually able to enjoy a little regular breads, pastas, regular peanut butter, ice cream while pregnant in the 2cd and 3rd trimesters. Though I was just happy to just be able to eat a bit more potatoes than I normally can on the diet or eat some corn on the cob and peas more often than I could if I wasn’t pregnant. Well my levels pretty much stayed between 2-4 and my daughter was born really healthy. She will be 1 on july 11th and all her milestones mainly have been met a month or 2 in advance of when they usually meet certain ones. If you have any questions feel free to message me.

    Avatar of Osgood

    THank you for your repsonse- and more importantly congrats on your healthy baby girl!
    I guess for me the question remains the same. There are stories of blood levels being at 15+ and people having seizures and other severe complications and the fact for me remains the same. I have no negative side effects to speak of and my lowest level over a decade span was a 12. SO…its hard to say that with all the resoucres that are there for children why there arent the same for adults. We have just as many issues ( if not more) then a child. nPart of that I know is that there are not many functioning adults with PKU. We are some of the older adults who have adhered to a life long diet and while I am grateful for that, I wish science and support would catch up to my generations needs.

    Avatar of Tracie

    Hi meant2be, nMy name is Tracie, and i am considered borderline PKU.
    I am allowed 60 grams not mgs of protein a day.
    I feel the same way you do. nThe only time i felt ill was when i was off diet. nMy levels can get as high as 10-15 , but i feel no different.
    I eat alot of veggies , reg. rice and potatoes.
    I am also allowed real cheese, but of course no meat of any kind.
    I understand what you mean sometimes you wonder if you even have PKU. nMy parents never believed i had it,but my levels said different.
    I do have a healthy daughter 10 yrs old. nShe is perfect.I was on diet i was so afraid of her not having all 4 chambers of heart or not having all of her limbs. nWhen i was expecting my levels got as high as 10 one time, and i panicked. nThe Drs. were amazed to see how healthy she was. nSo they had us bring her back every 2 hrs. for the next 48 hrs., and still no PKU. nShe was 8lbs 7oz. 21 1/2 inches all natural.
    I hope i was able to help you out.
    I will send you a friend req., and if you have any questions or just want to talk i’m always here. nBy the way what kind of PKU do you have?
    Take care,

    Avatar of Nick

    I can understand your confusion about the lack of symptoms. I was off-diet for about 30 years, but haven’t had any noticeable symptoms. I’m back on-diet now, as well as being on Kuvan – and responding well. I have also been quite intelligent, graduated from college with honors and a double major – while off-diet, and got my master’s degree with around a 3.8 GPA on a 4.0 scale – while working a full-time and a part-time job, and being on-diet only part of the time. In my case, I have variant PKU, with one mild and one severe mutation. As a result, my levels off-diet were never really high…12-15, maybe. From something I read written by Dr. Richard Koch, it isn’t unusual for those with vPKU to go 20-30 years off-diet with no negative side effects. Seems a little unusual with your low phe tolerance, but…every PKUer is different in how they handle phe – even those with the same mutations vary in their phe tolerance. Good that you’ve had the experience you’ve had…despite the low phe tolerance.

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