Anyone else have a child in therapy for low muscle tone? My son was identified as having low muscle tone in May, and we just started PT last week. He is 15 months old and can't walk and is pretty small for his age. I also think he may have some speech delays although the many therapists in the room did not seem to think that he did (but they only evaluated him for an hour, you know?). Anyway I have resisted googling this and am trying to trust the therapists, but I do know it can have some crossover with ASD and also that it isn't likely to "go away," just something he'll have to manage. Just looking for experience or feedback!
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I'm an infrequent poster (but frequent reader!)...I saw this and had to reply though. My son is almost 3 and has been in therapy for hypotonia since about one year old. We started with PT and early intervention and added speech and OT more recently. We're about to transition to therapies through the school district when he turns 3.
My son is on the more severe end of delays, and actually has global developmental delay. He just started walking in December at 29 months, and he recently had a language explosion - 3 months ago he had one word, now he has about 120 and has a few 3 word sentences! He's also on the small side, only about 35 inches now, and has hovered around the 10th percentile most of his life.
I've talked to so many mamas of low muscle tone kids and I can tell you it's a HUGE spectrum. Some kids are mild with only physical delays and tend to compensate well eventually, others are much more severely affected and may have breathing issues and feeding tubes. A lot of us are in the middle.
There is some overlap with ASD and hypotonia, but they're by no means always linked. My son doesn't have ASD and a lot of other low muscle tone kids don't either. But if he does have it - there is a lot of great therapy and support these days for autism. (And speech therapy often doesn't start until age 2 or so... there's such a huge range before then that it can be hard to clearly identify delays.)
My best advice from someone just a little further down this road - embrace the "inchstones", try the best you can to avoid the comparison game, don't feel like every second needs to be spent doing therapy, and find support for yourself (there's a great secret hypotonia Facebook group...PM me if you want me to add you!). You guys will be just fine. And sorry for writing a novel
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@karen: this is super helpful! I think one thing I am deathly afraid of is how I'm contributing to the problem by comparing him to his sibling, or putting his sibling's needs first. I have a very high energy three years old who needs a lot of attention and sometimes it is easy to put LO2 on the backbuurner because he is so content just to hang out. I've gotta find a way to carve out more time for him but I also don't want to single him out! So confusing and stressful..
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Not my experience, but that of close family friends. Their little girl was diagnosed with low muscle tone as a toddler. She'a now a happy, thriving 14 year old. They've done a lot of therapy with her over the years, but the most helpful for her has been horseback riding as therapy, which she started as a preschooler.
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My just turned 3 year old has hypotonia, but on the more mild part of the spectrum. He got evaluated at 11 months through early intervention and has had feeding therapy (for oral motor issues that are probably related), OT, and PT. His biggest issues when he was little were sitting with a very rounded back with his legs splayed out for support and not wanting to put weight on his arms.
Just to allay your fears about ASD, other than his motor issues, he's a very social kid with no cognitive issues at all. (I'd say he's bright, but I'm biased
) He started walking at 19 months. I empathize with trying to find time for exercises and therapy stuff. Especially now that I'm working full-time, I just want to hang out at night and on the weekends, even though I know I should do specific activities with him.
At this point, he's relatively caught up for his age, but there are still some issues. He didn't qualify for services through school now that he's aged out of EI, but he still needs PT only. He wears AFO's (basically ankle and foot braces, but pretty unobtrusive) to help with his ankles rolling in and to help him develop a foot arch. He's not as strong as other kids his age and is just becoming more independent with climbing stairs. One thing I've noticed is that he's a little cautious in active groups of kids because I think he gets nervous about being jostled and falling down. He's definitely not a rough-house-er. But really, we're so happy with his progress and most people are surprised when I say that he's in PT. I do think, though, that this will be something that he will always be working on. I'd be happy to answer any other questions about our experiences! -
My son wasn't crawling, bearing weight on arms (pushing up) or bearing weight on legs / standing / pulling up etc at 8, 9, or 10 months...he basically just sat and would even flop back sometimes. He was evaluated and qualified for weekly PT for low tone at that point. He started PT at 12 months, was crawling a couple months later, walked at 17 months, and now at 3 years old is just like any other kid. Maybe a more cautious kid, but jumping / running / climbing all the same. He wore orthotics for about 6 months when he was learning to walk.
At the time of the eval he made sounds but not the ones on the milestone charts like "mama" and "dada" so he was also evaluated for speech but did not qualify. At this point he has an insane vocabulary and is the most talkative and friendly little boy in the world.
Overall, try not to worry! I know it is so hard...I seem to remember also being worried about ASD at the time even though he had outstanding eye contact and social skills. He has had huge language and motor skill growth periods in the last couple of years and All of the worries and PT sessions seem like a distant memory.
As a side note, we have a 9 month old girl now and she is doing (or not doing, ahem) the same things as big brother. This time around we aren't worried at all as we have seen the outcome and know she just needs time and some muscle strengthening. It's just how my kids are made I suppose!
Thinking of you guys!
) He started walking at 19 months. I empathize with trying to find time for exercises and therapy stuff. Especially now that I'm working full-time, I just want to hang out at night and on the weekends, even though I know I should do specific activities with him.Reply
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