Low muscle tone

[Anonymous]

DS was diagnosed with low tone when he was 20 months. His low tone is primarily evidenced in his speech. He was a heavy drooler and late talker and had expressive language skills of a 10 month old. He has been in speech therapy for about 18 months and has an explosion of words -- long sentences and paragraphs now, but his articulation is pretty poor. He also has some fine motor issues -- he's not writing yet, so hard to tell how he'll do when the time comes for that. But, he hates playdough and sand and the things that would help build the hand strength he needs. He loves to run and is actually pretty fast, but his endurance is very poor. He has flat feet, pronates and needs to wear orthotics. He was also late to alternate feet on the stairs and still goes down mostly not alternating. So, keep your eye out and be ready to engage in some of the strength building exercises if / where you see delays and evidence of low tone. Good luck!

[Anonymous]

PP here who has hypotonia. One thing to watch out for is problems you may not immediately realize are related to hypotonia, such as (bad) constipation, bladder leakage, and eye strabismus.

Definitely all the kiddos out there with low tone who struggle in school need to be checked for strabismus. When I put my head on my desk as a kid, it was to give my eyes a break from focusing. Now I wear special glasses with prisms and life is much better.

[Anonymous]

Can somebody chime in, who does evaluation / diagnose on hypotonia? OT, PT, neurologist?

[Anonymous]

Anonymous wrote:Can somebody chime in, who does evaluation / diagnose on hypotonia? OT, PT, neurologist?

Our pediatrician diagnosed it early during a well-child visit. We were referred to the physical medicine department at Children's when he was slow to walk.

Phys medicine confirmed hypotonia and referred to an OT and PT (child had gross and fine motor issues).

[Anonymous]

Anonymous wrote:

Anonymous wrote:Agree with PP. my DS has hypotonia and neuro-related challenges like motor planning and visual motor integration. He is now 5 and the challenges become more pronounced/apparent as children age.

Was he on track as an infant?

NP. Mine was on track with the big milestones (rollling, sitting, crawling) until about 12 months, after which it became apparent he was falling behind.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My son is in 8th grade in middle school and has low muscle tone. He received private OT from 4 years old to 1st grade and OT services at school from 1st to 5th grade. He is very active and LOVES to be outside. When he was young he was in gymnastics until 2nd grade then couldn't pass the test to get to the next level. We put him into Tae kwon do from 2nd to 5th grade and he played soccer from 3rd to present day. We walk a lot and visit the beach and pool a lot.

He has no idea he has low muscle tone. We didn't really understand his diagnosis until about 3rd grade, because he was always at the playground running around with all the other boys and could completely keep up with them. But he couldn't ride a bike until the END of 3rd grade or swing himself until 5th grade (a huge acomplishment we had a swing in our front yard) He is an AVID and good soccer player, he makes a HUGE effort to play well but I can tell he just can't get to the next level even though his determination is there. He practices everyday on public fields, inside community centers and in our basement. It breaks my heart to watch him practice soooo much, he plays with kids that are on travel teams and can really hold his own.

His writing was HORRIBLE. He could not hold a pencil/crayon well until he was in 2nd grade, he had IEP accommodations to have his tests and writing done verbally. He could only write about 2 sentences when he was in 4th grade. (He is also Dyslexic and ADD) Physically it was hard for him to write. When he got to 5th grade his teachers made him write a lot and I just sat back and watched him, it was hard but he didn't want to appear different from his classmates so he just plugged along. Now in 8th grade he is writing pretty well. He wants to give up many days but we are there to push him along, many times I scribe for him and that accomodation was also in his IEP.

He is my hero; a sweet boy who has low self esteem because he struggles academically. He is a great friend, kind, beautiful, soooo funny! I don't know how we will make it through high school and if he will be able to keep up in sports (I hope he does- it has helped his self esteem) But we will continue to learn strategies and build our muscles and mind.

Be sure to ask for accommodations you believe your child needs in school. I even had the accommodation to have DS lay his head down or lie down when he became fatigued. They insisted he sit up but I insisted to have a lay down moment if needed every hour. Keep your child in some kind of physical activity either organized or not.

My daughter seems like this at 5. She is a twin, and was the first to walk/RUN, first to climb, and is in constant motion. She used to walk into walls, but the OT seems to be helping with that. We're pretty sure she'll get an ADD diagnosis eventually, but at the moment she's on grade level so no diagnosis yet. BUT - she can barely hold a crayon/pencil. When she does, she prefers to use a fist.

PP I quoted - thanks for reminding me I'm not crazy, not all hypotonia looks alike. My daughter doesn't realize she has a diagnosis, my kids both just know that she goes to play with Miss Katherine while her sister hangs out in the waiting room.

Eventually the delay in fine motor skills is going to catch up with her, I think even more than the lack of core strength and general "floppiness" that has been observed since the NICU follow up clinic (she was a 33 week preemie). Asthma (which she likely would have had anyway due to family history) and this hypotonia are her only lingering effects of prematurity. We have her in private OT now, we'll see what happens when Kindergarten starts in the fall. The schools don't currently see enough of a delay in fine motor skills to provide services, but they will likely be more of an issue when her peers are better able to write (Realistically, what's "on grade level" for writing for a pre-kindergartener? My daughter CAN color in the lines, but she needs to concentrate much harder than the other kids to do so.)

I am also decidedly NOT athletic, neither is my husband. I never thought about if some of this could be inherited but now I will.

It is often genetic. Have you read "The Out of Sync Child"? I'd highly recommend it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Older mom here. Son with hypotonia now 21 years old. Didn't walk until 22 months. It gets better with age. When he was young, 5-10 years, karate was the absolute best thing for him. They did exercises at the bar that were excellent to develop balance and muscle stamina. I also liked it because to me it equalled PT but was not isolating. Played some team sports in middle school because it was required, did OK. Ran plenty of cross country in HS, middle of the pack.

It was explained to me that muscle tone is like a thermostat dial, some people are more turned up, some not so much but are still considered in the "normal" range. CP or Muscular Dystrophy would be outside of the norm. I wouldn't worry too much, keep your child active and with other kids as much as possible.

My BIL was like this. He did not walk until he was 26 months old. Did not get any therapy. Probably would get an asperger's/ASD diagnosis now. Anyway, he is in his 50ties, semi retired, etc. No issues and has a very nice life.

How well do you know your BIL? What do you mean "no issues"? If he'd get an ASD Dx, I'm sure he had to deal with plenty of issues and there were limits to what he could do.

[Anonymous]

OP - I have hypotonia, as does my son. We both have Ehlers-Danlos Syndrome. Many pediatricians (like ours) aren't familiar with it. Take a look at this and see if it sounds like your son. https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Older mom here. Son with hypotonia now 21 years old. Didn't walk until 22 months. It gets better with age. When he was young, 5-10 years, karate was the absolute best thing for him. They did exercises at the bar that were excellent to develop balance and muscle stamina. I also liked it because to me it equalled PT but was not isolating. Played some team sports in middle school because it was required, did OK. Ran plenty of cross country in HS, middle of the pack.

It was explained to me that muscle tone is like a thermostat dial, some people are more turned up, some not so much but are still considered in the "normal" range. CP or Muscular Dystrophy would be outside of the norm. I wouldn't worry too much, keep your child active and with other kids as much as possible.

My BIL was like this. He did not walk until he was 26 months old. Did not get any therapy. Probably would get an asperger's/ASD diagnosis now. Anyway, he is in his 50ties, semi retired, etc. No issues and has a very nice life.

How well do you know your BIL? What do you mean "no issues"? If he'd get an ASD Dx, I'm sure he had to deal with plenty of issues and there were limits to what he could do.

My son has an Asperger's, ADHD and a developmental coordination disorder (low muscle tone/hypotonia) diagnosis: He walked at 16 months. DH walked at 18 months. BIL - DH's brother walked at 26 months. He is an Ivy educated, retired college professor. He has a nice life.

It's pretty much acknowledged in the family that my FIL, DH and BIL's father, most likely had Asperger's. He had the worst symptoms of the bunch and he attended elite eastern prep schools including boarding school. Was Ivy educated and worked for an international non-profit aid organization. He walked at 20 months.

My DH has low muscle tone too and probably would be diagnosed on the spectrum too. He ran track in high school and rowed crew at an Ivy.

DS on the other hand got PT and OT in school when he was diagnosed and got an IEP. Even though DH, BIL and FIL turned out OK without interventions, I am very happy that DS gets all the help he needs.