Community Discussion Forum Parent support Kindergarten

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  • #9583
    Avatar of Apostolia

     Ok, I know I,m being paranoid here, but I would appreciate some back-up…
    Sinve September, my daughter who is a PKU and two-ears old has started the colds and viruses in kindergarten. The last three weeks have been difficult. Ear infection and  five days later a virus with a 40 degrees calcium fever lasting 4 days….. Two days later and despite our doctor's advice who thinks I should wait for a blood test, I take her levels. 4,8…. When she was previously at 1-2…I 'm scared. I know that we shouldn't check levels when's hat close to an infection, but what if the levels two days earlier were higher? Please, you wonderfull Pkuers, reassure me that you had your high levels and infections as children too….I tend to reconsider kindergarden!

    Avatar of Tanya

    I can assure you, when Jacob is sick (and it seems often, he was also born premie) his levels are higher during this period. They go back down. Its short term. Its not the best option of course, but it is temporary, and I have been assured not to freak out (I do very easily! haha)

    The short of it, is it will be ok. Its normal to go up when they are sick

    We have actually had levels go up, where we were unaware the poor tyke had an ear infection. Seeing as his levels were up, we went and had  him checked out.

    Good Luck!

    Avatar of Breanna

    I was always taught that it is long term high phe levels that doctors worry about most. Changes in phe levels are bound to occur when your daughter is sick, going through a growth spurt, has a change in activity level, etc. However, as long as they are not long term I wouldn't worry too much.

    Growing up I had my share of high phe levels. Many were much higher than 4.8 (the recommendation for phe levels at my clinic is 2-6 mg/dl). Despite the high phe levels that I have experienced I am a college student studying nursing, a dancer on my colleges dance team, and a childcare teacher working close to full-time. I am happy, healthy, and fully functional.

    I am sure if you asked the people with PKU here they would all agree that they have had high phe levels at some point in their lives, so I'm sure your little girl will be just fine.

    Breanna 20 CPKU

    Avatar of Apostolia

     Thank you both for the support.

    Things have temporarily calmed down, My little one is well and happy, levels at 2,2 after the fever, so kindergarden does not seem so horrible now.

    Our doctor has reassured as also about the infections (basically, we cannot avoid them). 

    Thank you Breanna, you're kind of a paradigm for our daughters for us PKU mothers! brave , happy, confident. thanks!

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