We took her to see the pediatric neurologist just before her eighth birthday. She has significant weakness in her right arm (she is right handed) so the genetic blood test for HNPP was ordered. She also had a strange delayed second reflex reaction in each of her knees. The doctor tested her knees with the little thump and she kicked out twice every time. Don't know if this is related but the doctor thought it was strange so I am making note of it. We took her in for the blood draw a week later and are now awaiting the results.
My husband wasn't sure if he wanted her tested. We know it is in the family and if the children are having problems we can just assume it is this disease. I was torn. I want to know but there is the worry of how knowing can affect their future. Will they be denied insurance or have to pay a lot more? The doctor recommended we don't test them unless symptoms show up. I asked my daughter if she wanted the test, if she wanted to know for sure if she had it. She said yes, so we did the test.
PS: get a rolling backpack for your kids. I don't know what I was thinking. I feel like I am being so careful and cautious but then I go to the doctor and she asks if she is carrying a heavy back pack. I feel so silly. Of course they should not be carrying heavy weight on their shoulders and they do it daily. I feel so dumb. We ordered each of my girls one that day and they are working out wonderfully.
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