Thursday, January 20, 2011

Another Brain MRI Coming Up

I've been trying to move my family website here to my blog... bringing it all under one roof, so to speak. I was busy transferring some of the things I'd like to have here when the phone rang. The pediatrician was on the phone. I wasn't expecting a call. Well, not really.

I'm the eternal optimist. Last month, when she said she'd repeat sean's brain MRI if the tilt table test was normal, I heard what she said. The nurses had told me they felt it was normal even with him having a dizzy spell during the test. The blod pressure drop wasn't big enough to cause dizziness. When we saw the pediatrician a few weeks ago, she still had not received the tilt table results. I started to assume that there would be no reason to worry about repeating the brain MRI since I had not heard back yet. Then the phone rang.

I'll get a call when it is scheduled. She hopes we can get it before our visit with the Mito doctor in a few weeks. I understand why we have to do it.....I just don't want to do it. Here we go with another year started off with expensive tests. We will meet our out of pocket max by Febraury. C'est la vie.

We cannot just assume that all of his symptoms are due to the Mito. She explained that with his recent growth spurt, the lesion could also have grown. It has been three years since we checked it. To recap-- we found th brain lesion back in December of 2006 when Sean's migraines began to get worse and we ended up in the ER several times with him unable to stop throwing up. This was after being on meds for several years and seeming to have them under control. We saw a neurologist in Cincy who had him get an MRI done immediately. We received the results and the doctor wanted us to return for a repeat MRI with contrast and an MRA. We drove back to Cincy the day after Christmas. What a year that was-- this was the same time we found out Joseph looked liked he'd be needing a bone marrow transplant and they typed our entire family again. Put us in touch with the donor search coordinator who did th preliminary search that showed Joseph did not have a match in the donor registry.

I'm sure that the MRI will be just fine... but we can't just blame it all on Mito when we know he has a benign brain lesion (benign lesions can grow, too). I'm surprisingly not worried. More of a "we need to get this out of th eway, it is going to be fine, but then we can say this is most likely due to Mito."

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