Hypotonia in children - Page 5

[momoftworedheads]

Originally Posted by coreybreeze

I'm coming out of lurkdom to respond to this interesting thread.

My DD (17 months) is a bit of a mystery baby- suffered a full on regression of all motor skills at 6 months and has sloooowly gained, but remains severely delayed (can't sit up, crawl, fed by g-tube, etc. ) We have done an absolute poopload of diagnostic testing, the most recently being a muscle biopsy, but so far everything's coming back normal.

She's been labeled with central hypotonia and developmental delay. Its never even occured to me that hypotonia could be a diagnosis in and of itself. Very interesting!

Anyone out there with an older hypotonic kiddo who eventually learned to walk after super-delayed sitting? I keep reading that kids who don't sit by two generally don't learn to walk. I hope she's sitting by then, but that birthday's just kind of hanging out there like a dark cloud.

My youngest son is 4.5 years old. He did not sit up unassisted until he was 27 months, he walks, runs, etc. We did a lot of trunk strengthening exercises, bought him a Rifton chair and and propped him up with pillows to help him until he could sit up unassisted.

Take care,

Jen-

[marcelle]

Dear mates,

I am glad I have found this forum and to be honest I am really suprised that so many children suffer :(. Till now I felt myself that there is just my child with this strange condition far away around I even have never heard before about hypotonia till the time we starded experienced problems with significant development delay at one year of age. And I have already learnt a lot from all the posts in this group. Now I have finally better idea what we should expect in the near future because I was always having no idea what it is going to be as doctors are saying “nothing” and after some time I think I know more about this “diagnosis” then they do. They significantly has no other experience with the child with hypotonia before and I see their wonder and interest in my son progression. It is because I am from small town and the neurological threatment here is as well very terrible. Therapist do more nothing then something :( Unfortunatelly any specialist is too far from us as well as any suitable therapy so we do hard work at home mainly on our own.

I am really wonder if anybody has an experience with SCENAR therapy? Or has heard about someone has tried it? I have heard a lot about this therapy and it’s rumoured possitive curing effects. Like excellent progresses while threating cerebral palsy (and other neurological, skin, ... and many many other diagnosis). It looks like it can help to get progress within any diagnosis. You can find some doctor’s recommendations onto this therapy on internet but I cannot find any evidence of someone’s real experience or someone’s apparent positive achievements while threating their diagnosis with scenar.

I would be very grateful for sharing your or somebody you know experience whatever it is…

My son has decreased muscle tone and still cannot walk independently in his 24 months because of this hypotonia. So I think we might try this therapy…

I really appreciate your comments… :)

[Wild Lupine]

My son also has hypotonia. He has hit all his gross motor milestones late and has been in PT and OT since he was 13 months old. 

He does have an underlying diagnosis: developmental dyspraxia, which is a neurological disorder. He has poor motor planning in some areas, particularly feeding and swallowing, and also dressing, but oddly enough, his fine motor skills seem to be at or above age level. A pediatric neurologist diagnosed him. I encourage pushing to see every specialist possible to see if there's an underlying cause.. Having a diagnosis really makes finding appropriate treatment much easier.