← Return to Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus

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@nadinehunger

My 22 year old son was diagnosed with Lance Adam's syndrome in September 2024 after cardiac arrest due to a suicide attempt (diagnosed with bipolar/schizophrenia in 2019). The brain was without oxygen for 14 minutes. He was Intubated and in a coma for 3 days. He started myoclonus jerking and seizers a few days after waking from the coma. He was in the hospital until 10/16/24 on put on the following medications (Aripiprazole, Baclofen, Bromocriptine Mesylate, Carbamazepine, Clonazepam, clonidine, Hydroxyzine HCI, Keppra, Propranolol HCI, and other vitamins and supplements. He is currently in a Neurologic rehabilitation facility in Florida. His jerking seemed to have worsen in the last few days so the doctor increased the morning does of Bromocriptine Mesylate from 2.5mg to 5mg. The afternoon and evening doses will remain at 2.5mg. I cannot find on the internet that Bromocriptine Mesylate is the primary medication treatment for myoclonus or Lance Adams Systrom. The center is talking about discharging him in a few weeks. He is still a fall risk and needs 24 hour supervision. His upper extremities are pretty well controlled but his legs especially his right leg have severe jerking movements. On a good hour of the day he can get up and walk slowly with a walker. The max he's walked without stopping is 300 feet. But someone must be beside him at all times. I'd like my son to see a doctor that specializes LAS. Can anyone please help me in finding one in Florida?

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Replies to "My 22 year old son was diagnosed with Lance Adam's syndrome in September 2024 after cardiac..."

Thank you for your reply. I hope your son is progressing well. I am unfamiliar with several of the medications your son is taking.
When looking for a provider try to make sure you find one that is knowledgeable in movement disorders and post hypoxic myoclonus. Our provider told us to use the scientific name rather than LAS. Also, if you haven’t found it already, there is a Facebook group for patients with LAS and their caregivers/family. Search for: Lance-Adams Syndrome. I believe there are several members from Florida. They may be able to better direct you to a provider specific to Florida. If you haven’t discovered this yet, a lot of people with LAS state that extreme weather (too hot/too cold) impact their tremors/balance etc. maybe something to watch out for come June/july/august.

I forgot to add: from what I’ve read and just hearing from those with LAS, a popular medication regimen for the treatment of LAS is depakote or keppra with clonazapam. Some have found help with fycompa. But with all medications it really is what works best for that individual.