PKU and infection

PKU and infection

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PKU and infection

January 27, 2010 in Uncategorized

Hallo to you all. I 'd like to post a question to other parents, maybe they can help It's the first time that my two month old daughter has probably caught a cold. Just a rhyme, without any fever. Her Phe levels until now are normal (2). I thought today that she behaved a little different, maybe a little absent minded. My doctor reassured me that since she has no fever, the levels will not increase. Have you noticed any different behaviour while they are ill? I know that there is really nothing to do, but I ;m concerned about the damage any infection can do while she is an infant..Any experience could help . Thanks

7 Reviews of PKU and infection

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Levels do go up when a person with PKU gets sick. This is because the body starts fighting the infection, and part of the way this happens is by breaking down the proteins (including phenylalanine) already present in the body. Your baby will be fine though. It’s only long term high levels that are dangerous. As long as her levels go back down once the sickness is over, no damage will be done.

  2. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    Thanks a lot, you really calmed me down. I guess I’m overeacting… Thanks again for all the help

  3. Registered: Sep 4, 2007

    Posts: 0

    Aurora, Nebraska

    Agreed. It’s very important your baby continues to get nutrition while she’s sick. When your body isn’t getting nutrition from food/formula, it will start to break down its own proteins, to use as fuel. This in turn releases phenylalanine into the blood and brain. However, there’s really nothing to worry about. I know I was sick plenty of times in my childhood and my blood levels spiked. Although it might cause a few short-term changes (which you are noticing) no long term damage will occur to your child!!

  4. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Hello! I just wanted to reiterate what jenn and lorsar said. Growing up I got sick many times, mostly ear infections. Many of times the fevers that accompanied them are what caused my levels to spike. Again, this is because when your body is trying to recover, it goes after its own protein stores to use for strength, releasing PHE in the blood… the most important thing you can do (from what I have been told) is get her formula into her. That way she will have enough protein to keep her body from looking elsewhere for it. If her levels were not elevated then don’t worry. A 2 is a great level! Perhaps the symptoms are from being drowsy or absent minded because she is sick and more tired than usual. I would say just keep focusing on the formula when she is sick!

  5. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I agree with what everyone else has say. Although sickness can cause phe levels to increase it will not cause any lasting effect on your daughter. Every single one of us on that has PKU can tell you we have all been sick and we have all had our share of high phe levels. As long as your daughters are not elevated for a long period of time she will be just fine. Hunter pretty much summed up what I was going to say. Be sure to give your daughter her formula (if she isn’t too sick). Other than that all you can do is let the illness run it’s course and remember she is an infant first and a PKU patient second. Treat her sickness first and help her get back to her normal self then worry about her phe levels after she is feeling better.

  6. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    Thank you all for the help… Yesterday we had our first fever, in the middle of the night, with all the necessary accessoiries: Our dad having freaked out, me trying to be cool and a baby wanting to play at 3 in the morning , as she was feeling very hot and playfull!! It all turned out fine. I guess every single mom remembers the first time the child is sick.. Well, thanks again.

  7. Registered: Feb 27, 2008

    Posts: 0


    Hi my daughter is 2 and a half and has PKU. She has had numerous colds and fevers, and even a horrendous tummy bug last winter which meant she was in hospital on a drip with no formula for a couple of days. However, although her levels usually get high when she is ill they ALWAYS go back down to the normal range within a few days. The fact she has had a few high levels has had no impact at all on her development and she is above average in reaching her milestones etc. It is really scary as a parent to get a high level back, but it does happen fairly regularly especially in the winter, and you will learn to be more relaxed about it as your daughter gets older. It has taken me a couple of years to realise it but the doctors really are right when they say it is only long term high Phe levels that will have any permanent consequences (though I too notice my daughter is more irritable / less focussed when she is ill – not sure if it because her levels are high or because she is feeling awful!). Hope that helps

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