…when following up with Dr. R and Dr. Patti today. Dr. R is extremely concerned about the this mysterious movement disorder and is unsure why Akron Children’s released Gavin in the first place. He told us upon seeing him today that this is the worst he has seen him in 5 years. This once again coincides with what we felt and observed ourselves. Dr. Patti completely agree’s with this assessment. The problem we had with Akron Children’s Hospital is the same as the Cleveland Clinic. The both lack the benefit of a detailed history with both ourselves and Gavin. They don’t see the movement disorder something caused by Autism. They rule out any life threats and send him home. The problem with that theory is that Gavin has NEVER had ANYTHING like this before. Dr. R is very worried about Gavin’s mental status as well. This is A-TYPICAL behavior for Gavin but they don’t seem to listen to us.
He was telling Dr. R things that he didn’t tell the doctors at Akron. He was telling Dr. R about all the spiders that crawl all over him at night. He said they come out of his mattress at night. Then he said he figured out how to handle the situation. He piles everything he can find on top of himself at night and falls asleep under a mountain of clothes, blankets, sheets and stuffed animals. I had thought it was a sensory thing. I thought he like sleeping under the weight. Turns out it was the force field that kept the spiders out. Schizophrenia has once again be brought up. Dr. R is actually one of the few in the US that specializes in early childhood schizophrenia. So we are good as far as that goes.
Akron didn’t have all the pieces to the puzzle. We don’t either but we have a much better idea of what it is because we have been working on putting this puzzle together for 10 years. Dr. R told us today that he can no longer treat Gavin for anything until we figure out what i causing the movement disorder. He explained that anything we do at this point could just make things worse. So they are making arrangements to get Gavin in to see one of the few movement disorder specialists around. They are at one of the University Hospitals. The problem is that it may require us to have to leave the state of Ohio and travel to where ever this clinic is. Hopefully this clinic is in Cleveland cause honestly, that would be hard enough.
Things are likely to get even worse as we cannot adjust Gavin’s medications until we see the movement specialist. Dr. R won’t risk making anything worse then it already is. Adjusting the meds would also muddy the water and make it harder to determine what is going on. We agree with this as well. The problem is that Gavin needs his meds adjusted frequently and we will no longer be able to do that. We will likely see Gavin start to cycle and have more frequent meltdowns and he gets more and more frustrated with himself and the world around him. We are in for a bumpy ride ahead.
Lost and Tired