Hypotonia Support Group

My son, Tyler, has hypotonia and we don't know the cause yet. It's torture, not knowing. I do know that hypotonia is a symtom and not a diagnosis which means, there is a reason they have hypotonia. We went to the hypotonia center at Johns Hopkins on Aug. 10. Their goal is to find the underlying cause of the hypotonia. They are running lots of tests and we may have an answer soon. They are amazing there...caring and supportive. They told me that when a child has hypotonia it is either that there is a muscle disease or a disconnect between the brain and the muscles and that the signals that the brain sends to the muscles doesn't work quite right. Tyler's hypotonia is the brain/muscle disconnect....it's nice to know that. They were able to tell me that the day they saw him. Good luck, keep me posted.

Thanks for your reply Tylersparents. That is awesome that you have such a wonderful resource close to you!! We had to travel 90 miles just to go to the closest pediatric neurologist. How were they able to tell that Tyler's is the brain/muscle disconnect? We had 2 MRIs done (brain & lumbar), which were normal. All of the metabolic/genetic bloodwork was also normal. I'm not sure we will ever have an answer at this point. It's just frustrating that he won't walk (he is 21 months). Is your son walking?
I'm thinking if there is a medical reason for Luke's, it is probably a muscle disease. I really don't want to do the muscle biopsy though.
Good luck with Tyler:) Let me know how his tests go!!

Thanks!

hi tylersparents

my son's hypotonia is also a brain/muscle disconnect. was just wondering if there was anything in particular that you found particularly useful regarding his therapy. my son does ot and pt once a week (increasing it soon)... hoping for some supportive feedback as well as realistic i guess, as to what i can kinda expect ( i know every child is different but trends do follow)..
my son is 13 months and not walking or crawling..he recently was able to bear some weight when hes on his all fours, and is tolerating his tummy much more...still sitting supported though... thanks

My daughter was born with the hypotonia. We have yet to have a diagnosis but thanks to Tyler's parents telling his story we were able to also make an appointment at John Hopkins in Oct. PT and OT has really made alot of difference. But I am still scared. What does the brain/muscle disconnect mean? Our neurologist doesn't think her's is muscular. Keep me posted with his progress.

hi, my daughter is hypotonic in her trunk and hypertonic in her legs and arms, with some spasticity (tightness). we think she has mild cerebral palsy, which is a neurological symptom, but we still don't really know what's going on yet. going to a new neurologist tomorrow, hopefully they'll be able to add some info. we almost did an EMG test to determine muscle/brain issue, but chickened out after hearing some scary stories. still trying to stay optimistic and hope that maybe she'll just grow out of this. but with a bit of a speech delay going on too now, i'm worried that it might be a bigger issue.