Gavin’s had OT yesterday. While he was there, the therapist noticed a new symptom that had escaped our detection.
We are very aware of Gavin’s movement disorder but had not noticed the tremors. These appear to be new. They are possibly a result of the antibody infusion or they could be a new symptom of the, as of this moment, unidentified neurological disorder. We spoke with the immunologist this morning and she said that it will be difficult to know whether the infusion caused this or if it’s related to the underlying degenerative neurological disorder.
Regardless of what the cause is, this is not a good thing. Gavin was unable to actually write while at therapy yesterday because of these tremors. I think that we missed this in part because Gavin always sits on his hands when he is at home. The tremors are more something you would notice if you asked him to hold out his hands. It’s not something you would readily see in passing.
We will be at the Cleveland Clinics world famous, Cole Eye Center in the morning. Gavin is having a special eye exam done that could shine some much needed light in this unknown neurological disorder. I’m pretty anxious about this and by anxious I mean nervous. I’m not sure what to expect and how we will cope if they confirm our fears.
Please say a prayer for Gavin. Thank you again for all the support.
Hi Rob, did the tremor occur only when he tried to write or also when his hands were at rest? An intention tremor (tremor when you try to do something) can be quite common in kids with coordination problems but obviously Gavin's got a lot more going on than most kids. Will be thinking of you guys tomorrow.
Thanks Julia. The tremors are more recent and since we noticed them we see much more often now. The OT said this is the worst she has seen him. Hopefully today will bring with it some answers. Thanks again
I will be saying a prayer and sending out positive thoughts your way! Good luck on your test tomorrow Gavin! Hopefully this test will help hem figure everything out so that they can determine the best way to treat you! Love to you all!
He's not on risperdone or anything similar to that, is he?
Gavin has been through every single antipsychotic medication already. He has been on Clozapine for the past year months or so. Clozapine is the end of the road for antipsychotic medications and is the most tightly controlled medication in the US. Ironically it\’s also probably one of the safest because it requires constant monitoring and weekly blood work.
We are dealing with tremors with my aspie right now too. We thought it was his new medication, but we took him off and we're still seeing them. He had a brain injury at birth so it could be from that as well. It's so frustrating when you can't figure out what's causing it! I hope you get if figured out for Gavin soon and that it is a temporary tremor and not a lasting one. Good luck with all of the challenges your family is facing!
My recent post Sweet Moments of Repetition
Gavin developed a moment disorder but it was some how do to one particular antipsychotic medication. The tremors seem to have begun recently. Possibly do to the antibody infusions or it\’s just a coincidence and it would have happened anyway. Hopefully you guys get this figured out. I know how frustrating and helpless it feels to have to stand by and watch.
Tremors are no fun… here's hoping the neuropathy is an acute problem that will be improved with treatment. I'll be keeping you guys in prayer. *hugs*