Today we met with Dr. Kahn. Neil had to work so I had my mother-in-law go for the added support and an extra set of ears. Dr. Kahn evaluated Logan and going by his history...she doesn't think he is regressing as much as it seems to our PT, but rather he has had these problems all along and they are just presenting differently. His muscles are tired. Everything that she read/heard from us she feels that it is probably a genetic disorder and that he has had "it" since birth. This would explain the army crawling, the delayed walking, drooling, and the delay in speech. We don't really know any more today than when we went in (which I knew...bc she has to do all of the tests...). However, I got a really good feeling from her, and I don't think that this will be a dead end.
She ordered lab work (to look at some more genetic things), 3 different heart tests (bc it is all muscle problems we are seeing and the heart is a muscle), MRI of the brain, MRI of the cervical spine, MRI of the lumbar spine, and an MRI of the thoratic spine. She also wants to check him for a condition called myotonic dystrophy. I have no clue what that is... On a better note she did NOT feel that it is muscular dystrophy. That is GREAT news. She also did not think that the "tethered spinal cord" wasn't fitting either...he wouldn't have arm weakness and drooling with that. I think doctors and therapists shouldn't give out possible diagnoses...it only makes the parent a nervous wreck and worry even more!
Dr. Kahn did say that if these tests are inconclusive, we will be heading to Riley Hospital to meet with Dr. Walsh who is a pediatric neurologist who specializes in neurogenetics. He would then perform a muscle biopsy. I am hoping we don't have to go that route and that we can receive a simple explanation. I guess we will see!
So today we begin yet another journey in hopes of finding an answer!
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