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?