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.
