He Had An Idea

Last updated on: August 22, 2014 at 4:02 pm by Rebecca Frech

He Had An Idea 2014-08-22T16:02:31-05:00 Rebecca Frech

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We saw the pediatric neuro-muscular therapist yesterday. While his bedside manner left much to be desired (he was an a**), he was also the first person we’ve seen who seemed to have an idea about what is going on with Ella’s legs.

The long and the short of it is, he thinks that her immune system is attacking the nerves inside of her thigh muscles. He has seen it in other children with JRA. He said that rarely when a JRA patient is in flare already (and she is) and then gets sick (she caught two colds within a few weeks of each other) that the body starts attacking the myelin sheath around the nerves nearby.

Quick biology lesson – the myelin sheath is the protective coating around the nerves which allows the impulses to be carried steadily to where they need to go – it’s the insulation around the wires, so to speak. The good news is that it can heal. The bad news is that it doesn’t always.

We are hopeful. When she got weak the first time, she was steadily improving until she got sick again. That makes our first concern keeping her healthy. Thank goodness it’s almost Summer! The best case scenario would be that she stays well and this gives her nerves the chance to regroup their protective covers. She’s a healthy girl except for her legs, so this is possible. Worst case, she keeps getting sick and perpetuates the conditions which are causing her body to attack itself, or she doesn’t improve.

He has run some tests and ordered more. We go back in three weeks. We’re hoping that she can leave the crutches at home for that appointment. With physical therapy and stretching, she is getting stronger very slowly…but we will take it!

Tonight, we are thankful for a doctor with a clue, no matter how unpersonable he happens to be. Even a move in the wrong direction is movement, and may bring us to an answer in the end.

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