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Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus
Hello I am new to this discussion board and want to talk about my daughters condition, to get information and possibly even help someone who may also have this and not know. In early January 2023 she had an asthma attack and went to ER where she collapsed while walking in. She was in respiratory cardiac arrest. Drs performed CPR for 6 min before reviving her. She was intubated and put into medical coma. She was in a coma for 4 days. While in the coma she started have “seizures” which weren’t showing on eeg. Her entire body would convulse but no seizure in the brain. When she woke from her coma she couldn’t function at all. Every intentional action sparked full body tremors. About 1 month later she was diagnosed with Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus. LAS is a rare condition and is a complocation specific to successful cpr after respiratory cardiac arrest ( to my understanding) There is very little information on this condition. There are less that 200 people world wide with this condition. She is the only one in the state of wisconsin that we are aware of. I encourage anyone who comes across this discussion to google and see if this may seem like something you at have or someone you know may have. If anyone also has this condition or is the caregiver of someone with this condition I would love to chat. Also, if there are any medical professionals connected with mayo on this discussion that can offer any helpful info that would be greatly appreciated.
Below are just a few snippets of info from the internet:
‘Lance-Adams Syndrome (LAS) is an incredibly rare complication of successful cardiopulmonary resuscitation (CPR). It is a form of posthypoxic myoclonus characterized by action or intention myoclonus developing days to months after an hypoxic insult to the brain.’
‘The chronic PHM which starts after a few days or weeks in patients who regained consciousness is often stated as LAS, where intentional myoclonus is accompanied when attempting voluntary movements or during a voluntary movement. Dysmetria, dysarthria and ataxia with preserved cognition is also seen in most cases.’
‘A combination of medications based on the neurotransmitter hypotheses is often needed to obtain appropriate control of symptoms. Frucht and Fahn reviewed more than 100 patients with LAS, they found that clonazepam, valproate, and piracetam were effective in treating approximately 50% of these cases(6).’
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Hello, My mom is diagnosed with Lance Adam’s syndrome since March 2024 after cardiac arrest. CPR was done after 15 minutes. Myclonic jerks happed after 1 day in ICU. She is partially treated with Levetiracetam, Valproic acid, and Clonazepam. And she is still under treatment at the royal free hospital (london). The doctor informed us that he will modify some of the medication doses and he may add Perampanel and remove Levetiracetam and increase the dose of Valproic acid and Clonazepam.
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?
Hello @angelasanders, Welcome to Connect and thank you for starting this discussion on such a rare condition. I can't begin to imagine how difficult it must be for caregivers and members with such a rare condition as LAS.
I would also like to welcome @fawwazalenezi and @nadinehunger who responded to your discussion. Hopefully connecting with others and sharing information will be helpful for learning more about the rare disorder Lance-Adams Syndrome. If you haven't used Google Scholar before it's a good tool for finding the latest medical research on medical conditions. Here's what it shows for LAS - https://scholar.google.com/scholar?as_ylo=2024&q=lance+adams+syndrome+treatment&hl=en&as_sdt=0,24
The following research paper mentions 2 doctors in Florida as authors - Suparna R Krishnaiengar (https://www.medifind.com/conditions/landau-kleffner-syndrome/2941/doctors/suparna-r-krishnaiengar/7554042) and Ramon E Bautista (https://neurology.ufl.edu/profile/bautista-ramon/).
-- Lance Adams Syndrome in the Setting of COVID-19 Pneumonia: https://pubmed.ncbi.nlm.nih.gov/38903282/
@angelasanders, @fawwazalenezi and @nadinehunger, any updates you can provide will be appreciated by everyone.
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