Community Discussion Forum Adults and PKU 46 and CPKU

Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
  • #5786

    Hi,I’m new to this group. Even though I live in TX I have no one to regularly contact who has PKU and in the same situation. I’m late dx…26 months, was taken off the diet at 12, and after numerous problems mental and physical I attempted to go back many times starting in 1997. I anxiously await for a daily injection that you can take and will allow you to eat like a normal person-but right now I’m in pheBLOC. It helps, but guess I’m the last generation of the junk food junkies. I am disabled between unrelated health problem (fibro, osteoarthritis, myofascial pain syndrome, and spasms and shocks).
    It’s hard to think what’s gonna come up now that I’m reaching middle aged….pku related I mean. And the off-diet years.
    I hope to hear from y’all soon.

    Avatar of karan

    Hi txwildcat,
    I was late diagnosed too( 8 years) I am disabled with PKU related problems. I was off the diet all my life. My first experience with PKU diet was in 2004. I’m doing much better than I ever thought I would be doing, but the damage is done. I’d like to chat with you more if you want. I think we’d have alot in common. If you want send me a e-mail and maybe we could become friends??

    Avatar of Lucy

    I am 49 years old and have had pku my whole life. I was dx at birth. I don’t understand how someone could miss your diagnosises at such a late age. I have not physical, mental, or emotional problems from pku. I was taken off my diet at age 5 and have been off it my whole life. I was born at a time when doctors said that it was safe to take children off at that age. I have been puzzled how pku has effected people and not sure why. Anyway I just wanted to add my thoughts and hope all goes well with you.
    Lucy Day

    Avatar of Deborah

    Hi, I am new to the group also, I have PKU (hyperphe). I was only on diet a few times in my life, when I was very small, than I was taken off, and put myself back on when I went to camps for PKU. I did pretty well, I was very carefull when I had my children, now 5 yrs later, I am going back on.
    I am worried what will happen as I get older without being on diet. Plus I am not feeling great. Would love to hear from anybody who has suggestion on how to handle this with working full-time, and having 2 very active young boys
    Thanks in advance

    Avatar of Meaghan

    Lucy that’s amazing that you were diagnosed so early. PKU wasn’t even fully understood until the late 60s. you were a very lucky person to be diagnosed so early. The diet was also not widely used until then as well. You were a very fortunate person.
    As to cat, I am hoping right along with you for that injection. Personally I don’t take the phebloc, don’t really want to but I think thats a good invention for people who find it hard to stay to the diet. I wish youthe best.
    nMeaghan nCPKU and in college

    Avatar of mary

    hi txwildcat:
    my puter name is angelears07
    i am 46 years old 2 ,going throught
    the same thing u r but i am awaiting ok 4 food add ins
    just hunging in limbo like u/al so have 2 other sybolings
    that have it/older sister is a carrie of it not affected by it like we r
    /my real name is mary-jo i am the youngest of 4 kids/my 2nd oldest sister is having her 1st presention 4 pku 9/11/07,also me w/her here so hard 2 get help now,
    i have been off dite sence i was 6 or 7
    thank you
    for your help


    Hi There,
    I Live in Halifax, Canada, and am also 46 with cpku, and was
    also late diagnosed. I was the 1st baby with this condition
    in the old Grace hospital in Halifax, and the doctors didn,t
    know what was wrong. They did all sorts of tests and all
    the wrong ones until one doctor thought he knew what the
    problem was and did a simple diaper test, and that,s when I
    was diagnosed.
    I went of the diet at the age of 7 beacause it was just too hard
    to stick to, and was off it for a long time. I went back on in
    June of 2000, and now been back on the diet for close to 7 years, and am doing very well now, and almost 2 years ago
    I moved out. It is great that this forum is here so we can all
    share our stories and experiences with pku.

    Avatar of Danielle

    Hi Everyone, nDoes anyone know if there is a pill that I can take in place of the formula powder stuff?

    Avatar of Breanna

    Hi, I’m not an adult (I’m 16) but I just thought I’d drop by and say that I know they have something called the Phlexy-10 capsules. I don’t know how many you would have to take though, I just know about them because a friend of mine takes them. You would probably have to get in contact with a dietitian and talk to them about it.
    I noticed in a few other posts you said you might be pregnant. I would suggest getting in contact with a dietitian right away! They would need to do a blood tests and then you’ll probably have to have blood tests done once or twice a week. Good luck! nBreanna 16 CPKU

    Avatar of Meaghan

    YEs its called phlexy-10! Im on it right now theyre great, you have to take a lot but its convenient. Many doctors want you to also take the medicine for caloric purposes and not just the pills though. Take to your doctor.

    Avatar of anne

    hi my name is anne i live in australia the answer to your qestion there is tablets out there called plexy-10 tablets and plexy-capsules hope it helps you
    from anne

    Avatar of Tracie

    Hello All, nMy name is Tracie,and i am borderline PKU.
    I have been off diet since 11 yrs old andnow iam 39yrs old.
    I just started back on diet,but 1 month ago.
    I did suffer from PKU seizures,headaches,moodswings,and worst of all Anorexia.
    My Dr.who lives in La. Calif.
    has told me as i get older to report how i feel. nThat is when they found out i have Celiac disease.(Apparently alergic to all wheat too) nYippee.LOL
    I was born in England in 1969 as was caught at birth. nAt that time my parents moved to the USA.Specificlly CA. that is where i meant my Dr. he is awesome the problem is he is about close to 100 yrs old.(Not Joking)
    Now i live in Asotin WA. where no-one knows about PKU. nSo i am having a hard time finding a dietition
    who even knows what PKU is.
    Anyways not sure what happens to us as we grow older,but i guess we’ll be the first to know.
    Stay strong everyone.We made it this far.
    Take care, nTracie-PKU

Viewing 12 posts - 1 through 12 (of 12 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional