New onset of myoclonus after bulbar symptoms

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Gylnx

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My children 12 and 5 had bulbar weakness with dysphagia, dyspnea and dysarthria. Their pediatrician thinks they have neurodegenerative disease. Now they have new onset of myoclonus mostly during sleep. Both started on one side of the body. So has the shoulder twitch and he lost 15 lbs and lots of muscle loss. He did recover his speech and swallowing issue but there is tongue, jaw and lip fasciculation. General neurologists can't figure it out. Is there a list of ALS clinic that see pediatric cases or how do I find out pediatric neurologist who specialize in Neurodegenerative disease?
 

Nikki J

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I am sorry you must be frantic. Your best bet would be a major medical center attached to a University such as Mass General, Hopkins or whatever is near you. Another thought would be a major pediatric hospital. I would see what was on their site , consult with your neurologist and also call anywhere you are considering. Pediatric ALS is exceedingly rare but there are many neurodegenerative genetic conditions( also rare) with more being discovered all the time
 

Gylnx

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Thanks. Yes we tried MGH and boston Childrens and were told both have benign fasciculation and myoclonus which doesn't make sense because the symptoms started at the same time and my son had more bulbar issues. If anyone knows a neurodegenerative specialist in MA or CT, I will try again. For now they only have myoclonic symptoms.
 

Nikki J

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You could try umass. Dr Brown is an ALS specialist but he has a strong interest and does research into neurogenetics but if they were evaluated at mgh and childrens I doubt ALS is your answer Especially as you said the bulbar symptoms improved. I don’t know if Dr Brown sees pediatric cases at all but you could ask
 

wishmobbing

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Thanks. Yes we tried MGH and boston Childrens and were told both have benign fasciculation and myoclonus which doesn't make sense because the symptoms started at the same time and my son had more bulbar issues.
Symptoms starting at the same time in two kids of different age won't make sense for ALS also. What would be the likelihood of this? Recovering speech after a loss and reversal of swallowing issues doesn't sound like ALS.

I sincerly hope and think that the odds are on your side and against MND. If onset was at the same time the first thing that comes to my small mind is a viral infection or environmental toxins?
 

Gylnx

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Son had PFT; MIP=40 MEP=80 were low range of normal for age. Asked neurologist, and he said he does not know how to interpret it. That’s what makes it very difficult.

The specialist should be able to tell that these resolved symptoms are not worrisome. However he has had respiratory complaints for a year or so with difficulty inhaling. He also has hand eye coordination and grip weakness on one side where the muscle twitches. No EMG at this point and full exome genetic and FALS panel was negative.

Other than the possible diaphragm weakness and twitching, right now there is no major complaint. Dr. Brown provided some names of local pediatric neurologists.

They both developed some of the acute bulbar symptoms about 2 weeks after vaccination of 2nd dose but the myoclonus seems to stay. Not sure of the temporal relationship and whether this is progressive. Some articles point to GBS but only for much older people. Contacted NIH who directed me to CHOP. Waiting for appointment in June.


I noticed first in February a tremor in one hand and mild tongue twitching in my son. Then saw the shoulder twitching that seems to persist esp at night. He also reported swallowing difficulty and before he had slurred speech. He was dropping things and tripping since September. I could not find any other disease that progressed in span of few months but he has been having breathing issues for 2 years and difficulty climbing stairs. I know these are non-specific symptoms and ALS is extremely rare in his age group and I’m sure neurological exams would be fine at the beginning for many people who eventually get diagnosed. We wanted to take a wait and see approach given normal neurological exam and to avoid EMG for now.
 
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