Special Needs


My son is 13 months old and has been struggling with Hypotonia - mostly due to his traumatic birth.
He is not scooting or crawling, and I am just looking for others who have been or are in my position, because most everyone I know with children are "normal" and its hard for me to see my little guy so far behind.
He is doing outpatient rehab as well as EI through the school district, but I feel like he's never going to get going. It's a little disheartening. 

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Re: Hypotonia?

  • There are a few of us on the board that have LOs who have hypotonia.  My DS2 has a mix of high and low tone due to his CP (cerebral palsy).  He was late rolling (as to be expected).  He Army/low crawled at 12mos but did not regular/4pt crawl until he was just over 2yr old.  He just turned 4yr old. 

    Does your LO have any other issues besides low tone?  This is a great board.  Very supportive and informational.  :-)
  • My daughter has hypotonia.  She was just on the late side of normal with all of her gross motor skills.  Now at almost three gross motor is actually her strength.  Where we have problems is speech (apraxia) and she gets easily fatigued.  I have to force breaks on her to keep her from getting overtired.

    Hang in there!  It's hard seeing other kids doing things on a normal time table when yours isn't. The never ending barrage of "is he walking yet?" that you hear around this age stinks, too.  You are getting help early though which is so crucial.  This board is very supportive.

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  • Welcome! My dd has hypotonia. It hasn't really impacted her gross motor skills (minus hitting them on the late side of average) to the surprise of all her therapists--mostly just speech.
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  • DD has low tone due to her CP, which is caused by PVL, which she developed due to her prematurity (Lol, did you get all of that?). She is 2.75 and doesn't walk, stand, or crawl. She learned how to roll at 19 months and didn't sit until a week after she turned 2. And, she still can't get herself to the sitting position (if she is laying on the ground). There is a lot of variation in Hypotonia. Some develop on the late side of average, and some may never hold their head up. We were told that most children who learn to sit by the age of 2 will walk. But, children who can't sit by the age of 4 will, more than likely, never walk. It sounds like you are doing all the right things - therapy is cruicial. Welcome to the board!
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  • My daughter is the far far low side of normal for tone.  It's primarily an issue with her lower legs.  She didn't crawl until she was a year (the day she turned 1) and walked at 18 months. At 3 she was 5th percentile for gross motor.  Now she is 5 and has mostly caught up.  She still fatigues easily.  But, we make sure that she has lots of exercise (play ground time, dance, gymnastics) to keep her lower leg muscles strong.  She'll never be an athlete, but you wouldn't know anything was wrong watching her.

    I remember how hard it was to watch her so far behind her friends.  She did eventually catch up.  I think her peers stopped accelerating through their gross motor milestones and she was able to catch up around age 4 with weekly PT/OT sessions.

    When you say birth injury do you mean a high grade brain bleed?  My daughter was born early, but had low grade IVHs.  She doesn't have CP - her low tone issues wold have been a lot more severe if that were the case.  I think my daughter's tone problems are caused from her inheriting my hyper-flexible joints. 
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  • My advice would be to just keep an eye on things and use your mom instinct. My daughter failed to walk by 18 months and initial diagnosis was just general hypotonia, but eventually we ended up discovering that she has mitochondrial disease which causes muscular dystrophy. She's did great with physical and occupational therapy and I am glad we got her started early! She is now 11 and doing awesome!
  • My 6 yo has low tone, primarily in her core, and some coordination issues caused by a vestibular processing glitch (gravitational insecurity).  She didn't crawl until 12 months, pulled to stand at 15 months, walked at 18 months.  She's been in OT and PT since about age 2.  It is much harder for her to learn some gross motor things than it seems to be for peers/her brother, but she's doing it.  She rides horses, swims across an Olympic sized pool, and learned to ride a bike without training wheels this summer.  When I sent her to preschool at age 3 she still could not walk up or down stairs--she butt scooted--so this is tremendous progress in 3 years!  She'll never be an athlete, but after the bike milestone I feel like she's mostly learned everything she needs to do to keep up with her peers.  She still receives some OT on at IEP at school to help with crossing midline, bilateral coordination, etc.  Her handwriting is very weak.  I definitely credit the therapies with helping her achieve all that she has in the last 3 years.
  • legalbeagle1legalbeagle1 member
    edited October 2013

    @Susan_KW @wellfleet04 and all moms of "older" kids Thanks for giving all of us hope!

    My son has hypotonia.  He's been in PT for about four months now and is doing really well.  He never stops moving and doesn't seem to get tired, which seems weird for a kid with hypotonia.  We're still waiting on first steps and words.  Fingers crossed.

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  • I think Nate has mixed tone. Low in the lower trunk and fingers, high in the hip flexers and high in the upper chest and shoulders. Learning to walk and use stairs has been very challenging. He just isn't loose enough so his spine can make corrections for balance.

    He has hypoplasia of the corpus callosum. I think if your brain is messed up in some way the "tell" is muscle tone.

    Does anyone have hypotonia and no brain issues diagnosed? Would ASD's count as a brain diagnosis? Their brains are different, No?
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