Deep breath

June 17, 2009 at 7:32 pm

Hi, Stacey, I am on the “take a deep breath” side of all this. Listen to your mom’s heart. Several times you have said that you think that this is not something bad in Conner and also that he is very strong and able to run and jump and move well. As a person that works at a Children’s hospital, we see kids that toe walk. It is often a habit and after doing it a while, the heel cords get tight and it is hard to stop toe walking. When there is an underlying problem it is more likely muscle weakness or muscle spasticity rather than a neurologic condition like CIDP. Some people are also naturally born with mild reflexes and some with very reactive reflexes. As Sue said, it is important to do a little extra like the hand pulling (enforcement) method to make sure that reflexes really are not present in the legs. It is also important to look at all reflexes not just the ones in the legs. I also have been very impressed in my course through this neurologic illness the variety of ways and skills that people have with a neurologic exam including testing strength and reflexes and watching gait. Connor has excellent strength in his feet from what you say and functionally seems to be doing well in playing ball games, etc. I also would not worry about the tripping unless it is new. I would reccommend checking the reflex issue out well, but please don’t panic about it or think of it as an emergency. It is an issue.

If Conner really, reproducably has loss of reflexes in the knees and ankles, then CMT should be at least thought about for both of you.

If Conner needs AFOs, I have seen some really cool ones made with dinasauers or other decorations build into the AFOs–very kid friendly for any part that might show under pants or in shoes.
WithHope for a cure of these diseases