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hypotonia switching to increased tone at 3 years?

post #1 of 4
Thread Starter 

My daugther is still undiagnosed but has a lot of things going on. She has always been hypotonic since birth and she is checked every 6 months by her physiatrist on her tone. Well 6 months ago she was still hypotonic but at this last appointment she has switched to having increased tone, mostly in her legs and her left leg is worse. He says he doesn't think it's bad enough yet to need meds or botox but we might be heading that direction if it gets worse. She just turned 3 in April. I know it's common to switch from hypotonia to hypertonia while in the infant stages but has anyone elses kiddos switched this late in the game? Thanks!

post #2 of 4
Thread Starter 

Just bumping this up in case anyone who might have a similar experience missed it.......

post #3 of 4

We don't have this exact situation but are dealing with hi/low tone.  My youngest DS is 3 also - he has global hypotonia (all over) but also has hemiplagic cerebral palsy, so he has increase tone (primarily in his right lower leg, but also somewhat in his right arm).  He has two underlying conditions though causing the difference (Noonan Syndrome causing the hypo and then the CP)

 

We've been doing PT since he was 6 months of age (when we only knew about the hypotonia).  We found out formally about the CP at age 18 months and originally, it was diagnosed as HYPOTONIC hemiplagic CP (which is pretty uncommon).  From about age 2-3, we noticed that the right side was in fact probably getting hyPERtonic and indeed, his dx was changed to hypertonic hemiplegic cp last year.

 

So, we deal with hypertonia on the right side and hypotonia everywhere else :) 

 

He had SMOs from 15 months->2 years to help with the hypotonia and give support.  At 2 years, we moved to a UCB (simple orthotic in the shoe) on the left side and a slightly higher SMO on the right (hyper) side.  At 3, we moved to UCBs on both legs and a night brace/AFO at night which stretches the right (hyper) side.  Unfortunately, it's still not stretching enough and the physiatrist is thinking that we might need to do some botox.  We're giving it another 3 months to see.  He's not a toe walker and at rest, his feet are not dramatically different looking.  However, it is really hard for him to stretch that right side anything past a 90 degree angle in the right ankle and it's getting worse.

post #4 of 4
Thread Starter 

your story actually sounds very simliar to ours! my dd has global hypotonia but the part that switched was that her left leg now has increased tone especially the upper thigh. She does have the *unofficial* diagnosis of hypotonic cp but her physiatrist didn't want to put it on paper because it still wouldn't explain the rest of her symptoms and is not a primary diagnosis. (she is still undiagnosed) She has had SMOs for the last 2 years. Her ankles are *very* hypotonic, without them she actually walks on the inside of her ankle bones. Thanks for the feedback! Have you seen an effect in development either way since the switch to hypertonic on the one side? Just wondering how it works with one side being hypo and the other being hyper. Thanks!

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