What's the harm if the phe value is too low for more than one month?

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    • What's the harm if the phe value is too low for more than one month?

      My son's Phe value is 0.1(target is 2~4) for 5 weeks after he was found to be a classic PKU.
      He is a new born baby , so I'm wondering whether there is already harm to his brain. :(

      Does anybody know the similar case? And what should I make up?

      Thanks a lot.
    • Hello,

      Too low Phe levels do have a similar effect as high Phe levels. This is due to the fact that the body uses own protein (which contains phenylalanine). For details I would definitely talk to your doctor. If Phe levels are too low generally you need to increase the protein intake. Nevertheless the right statement for what to do can only be given by your doctor!

      About brain damage I cannot give you any information. If you stick to what doctors say things will turn out good. It's important to get levels right as soon as possible but I think being too low for a few days won't be a total disaster. Again this is no medical advise.

      greetings
      PKUBoard.info - since 2004 - Invite your friends
    • Thanks a lot, GreXXL.

      I guess the baby's tolerance value is dynamic, am I right? I though that was stable, but I was wrong.
      At first several days, while he got 300ml milk per day, his value is around 7. Then we increase about 50ml/day silk each week. Now when he has 600ml/day milk, his value is still 0.1. Any suggestion?

      Is there any signal that can hint any brain damage? Or how old of the bayb can the parent find any brain damage?

      BTW, do u know when will the home-test-phe kit go to market? Then I can monitor the value every day or the effiency is too low here.
    • Hi,

      You know I am not an expert just a mother of a PKU girl. What I understand from low Phe levels is :

      • If the diet is too strict, and if you are not providing enough protein to the body then body starts to use its own protein source mouscles.. But when body starts to break the mouscles then the Phe levels starts to increase. Sometimes with a really low Phe intake you can get high values due to this fact. But in your case, as the Phe level is low, it can't be possible that body start to use the own protein source.
      • Our body and brain needs protein and Phe. That's why the doctors try to give as much as natural protein to the PKU'ers.. If the Phe levels are too low, this means body is not getting all the amount of required phe/protein. Which can cause growth related issue in the long term.
      • But as your baby is just a month old, it can be normal to have fluctuations in the need of protein intake or tolerance. During the growth attacks, body will need more protein and tolerance will be higher.

      I can tell you that do not worry about brain damage as you are in contact with the Doctor and also Doctors are increasing his intakes. (Brain damage for PKU can be happened on a long term high values..not for a month low level..)

      It is normal for a new born to have fluctuations in intake and tolerance.. just keep the close contact with the dietitian or doctor.. eventually you'll find the exact amount which is working for your son.. (and it can also change in the wrong run when he grows..)

      Don't worry about your son just enjoy.. ( I know this is not easy but when I look back this is something that I regret, as I was to busy with my worries, I couldn't enjoy her baby times.. but now she's a 6 year old, smart, lovely, beatiful girl... ;) )
    • Thanks a lot.

      I read a handbook which says the lack of Phe would also lead brain damage, slow growth, and the dropping of hair . This increases my worry.

      His main diet was the special milk( with no Phe, and with all others which compose of protein), so his protein is almost enough except the Phe.

      As u said, I wish, the low level time is not long enough to cause major affect.

      the doctor said if the baby is Well at six month, everything is Ok.

      There are lack of resources for us to learn how to do, except the internet forum.
    • Hello,

      Things have bettered over here in Austria, but I know what you are talking about. At the beginning of PKU diets there have been some horror stories. What I always say: It's good to be a bit "scared" or better to say have respect for the desease. Though you have to remember if you keep the blood levels right (in the suggested range) your child will develop great.

      Also you need to get comfortable with the diet so your child can learn from you (later on). I know it's easily said but I think most parents are scared first - before they get to know the diet better. I'm sure you will manage it!

      And please keep asking questions, we will try to answer the best we can.

      greetings
      PKUBoard.info - since 2004 - Invite your friends