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).’