PKU.com Community Discussion Forum Parent support what should I do with high phe that never comes down?

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #9792
    Avatar of medina
    medina2009
    Participant

    Hello everybody, I have a 3 year old boy with pku. always his phe was between 2 – 6. but within six months we did test for three times. and his phe regardly was 8.9 , 8.5 , 9.6. whenever we tested him, we made him go on a diet. even in the past we gave him normal bread, rice or pasta, but now we buy for him all low protein food, but we cant see any improvement in test result. I should say that he doesnt have any bad symptom or at least we cant see. I would appreciate your good suggesstions.

    #9795
    Avatar of Apostolia
    foufouka
    Member

     Is your baby taking enough formula? Check with your doctor, sometimes we forget that children grow up and they need more protein.

    is it possible that he has an infection? Did you check for cystitis or otitis?

    Is he taking enough calories? As he grows up he needs energy. If he doesn t get it he will break down his own protein and you will have increase in phe.

    Could it be a food he is eating that you think is low pro but it is really higher?

    At the end maybe he cannot handle all the protein he is having. Last summer, my daughter after a phe tolerance test ended up with 600 mg per day. But during winter she stopped growng up and furthermore little subclinical viruses led to higher levels. So we lowered the intake to 400 and her levels went back to normal. Now we increase the intake again and she tolerates it well.

    Hope this helps.

    #9796
    Avatar of medina
    medina2009
    Participant

    thank you for your answering, but we check for all of these cases, we increase his formula, we cut his normal bread and give him special bread and we test him for all infections. he is healthy and happy and even he doesn't have any phe problem such as headache, lost concentration, and . . . but this number is always high.

    #9799
    Avatar of Geraldine
    gege
    Member

    hello Medina,

    One family in France had a similar problem: their 4 years old girl had unexplained elevated phe levels. It lasts for 3 months and then came back to normal. Dieteticians and doctors had no explications for that….

    Some people with PKU report that they used to take a deworming medicine (against intestinal worms) when they have unexplained high phe levels that last for long.

    Hope this helps!

    #9805
    Avatar of medina
    medina2009
    Participant

    thank you very much for your answering, you said that maybe sometimes the number of phe show the high number, but it doesnt have any logical reason?

    and about the medicine, my son doesnt use any special medicine unless iron reinforcement syrup.

    #9807
    Avatar of Geraldine
    gege
    Member

    It looks like it happens sometimes: this little french girl had high phe levels for three months with no logical reasons.

    Medicine: you could try to give your son a deworming medicine.

    cheers!

Viewing 6 posts - 1 through 6 (of 6 total)
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