Community Discussion Forum New to Hello Everyone

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
  • #8849
    Avatar of James

    Not being a newbie to forums I figure the best way is to give a quick intro.

    My name is Jimmy, I'm currently in Baltimore. I've been faced with a few problems that I am
    beginning to think are caused by PKU. I was diagnosed with PKU at birth as a mild case. I 
    was taken off the diet at age 2 or 3. I've been on a regular diet since then minus about a month
    back in 2007. I had 4 seizures in 2007 then they were under control until last month when I 
    had another while driving. I totaled my truck and wasn't hurt. However after doing some research
    I've found that seizures may be caused by PKU. This also may explain my facial twitch and recuring
    headaches. So I'm pretty worried after reading some of the things tonight on the web. Stuff about
    people becoming wheel chair bound.

    I'm a fully functioning member of society. Naval Officer, college graduate and work in a very
    demanding field. Things I cannot risk losing to any medical condition. I have an appointment
    with my new neurologist on the 14th and I'm going to bring up PKU when I meet her.

    So Hello, and I will be lurking around here for a while to come.

    Avatar of Sarah

    Hi, nice to meet you. Some of your problems may be diet related, and should go away/reduce in intensity with some dietary control. Good luck with your appointment! 

    Avatar of Sarah

    By the way, it might help to try to find a PKU clinic in your area. I am sure there are some not too far from & they will have a much better understanding of diet control & your neurological issues.

    Avatar of Breanna

    Some of your issues could be related to PKU, and like Sarah said they could go away or lessen with dietary control. It would be a good idea to contact a clinic in your area that treats PKU. If you do not know where to go you can use the clinic finder link above, go to and click 'Clinics' under the 'Links' tab, or let us know where you are from and I am sure someone will be able to help you out. Once you find a PKU clinic they will be able to test your phenylalanine levels to let you know if dietary restriction is necessary.

    Good luck, and if possible lay off on the meat for the time being as that is probably where you are getting the majority of your protein from, and protein is in general not a good thing for those of us with PKU ;).

    Avatar of Cook4Love

    A blood test will reveal if your phenylalanine levels are too high and from there you can figure out if PKU could be the cause of your seizures.  I am not sure of your age, but the fact that you were taken off diet so young must mean you have a very mild form of PKU.  That being said, as you get older you consume more and more protein and it is very possible that your PAH enzyme (in your liver) activity could not break the growing amounts of phe and it is accumulating in your blood.  You are likely better off at a clinic that deals with PKU so they know what tests to run.  Just so you know, there is a relatively new drug out called Kuvan (BioMarin – the manufacturer owns this website) that might be a huge help to bring down your levels.  Good Luck & keep us posted!  Brenda

    Avatar of Patrick5678

    I think you should find a clinic in your area which specialises in pku. They will help you so much with getting your phe levels under control and get regular blood tests done. This way you will know for sure whether your seizures are related.  I do know from untreated pku that seizures are common with high phe levels but this is more in the severe case of pku. I do suggest that you get the support you need for your pku. All the best.


Viewing 6 posts - 1 through 6 (of 6 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