Re-entering Crisis mode with Gavin

Gavin has lost control over his body again. He was doing really well and still is behaviorally. The problems lies in the fact that he is losing control over his body and hearing voices. He is once again having conversations with Sonic the Hedgehog. He keeps hearing other voices that he doesn’t talk about but we know they are there because he is constantly asking us if we were just talking to him.

Behaviorally he is doing well. Very few if any meltdowns. The thought of sending him back to the Hospital is heartbreaking because of that. It would be easier if it were a safety issue or he was violent again. I think he would probably go back to the Cleveland Clinic. He would probably go to the Peds floor and get a full neurological work up. The movement issues had stopped awhile ago and have more recently resurfaced. It’s really hard to watch him lose control over his movements like this.  We need to find him the help he needs and we need to find some answers. We need to silence the voices and give him a sense of peace….Missing school will be a problem as the traveling back and forth. As parents I don’t think that there is really a choice to be made.

I am waiting to hear back from Dr. R’s office.  We will need to get him in there and see what he thinks. I really think we are running out of options.

2 comments

    • rmagliozzi on August 19, 2012 at 8:42 pm
    • Reply

    Rob, are you sure he doesn't have PANDAS? Some children do hallucinate during PANDAS episodes, because  it throws of the chemical levels in the brain, especially dopamine. Many have trouble controlling their bodies, presenting symptoms of movement disorders, Syndham's Chorea and even dystonia. My son with autism and PANDAS has pretty much had all three of these, but no hallucinations. II will get calls from his teachers once in awhile that he is having trouble controlling his body, and then we know his antibodies are high again. It has a very broad range of symptoms depending on severity and if other parts of the brain are also affecting. PANDAS can progress to other neurological conditions as well, causing mito issues that  can be primary or secondary and chronic fatigue, dysautonomia, etc. 

    1.  @rmagliozzi While this is a really old post, I am going to bring this up with his doctors. I honestly don't know if that has ever been ruled out.

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