Low muscle tone

[Anonymous]

Our child met all the milestones as a baby, sitting up, crawling and walking by 12 months but she did seem somewhat weak in retrospect. She was diagnosed with mild hypotonia around age 2 by a neurologist. She seemed uncoordinated, bumped into things a lot, very active. Diagnosed with ADHD in 1st grade. She did have a bit of PT which helped with riding a bicycle and other fine and gross motor milestones. Hypotonia is a neurological condition and it's hard to get stronger because it's a signal to the brain that is weak. It takes her much more effort to open and close faucets, open doors, twist things open, etc though she has improved very much. She always wanted to participate in team sports it just doesn't seem to have the stamina.

[Anonymous]

Low tone is common and not a huge deal. Could just mean that your baby will meet milestones a bit later and may not be the most athletic kid out there. Could also affect writing later on or have a co-morbidity with some other issue like ADHD. There are lots of things you can do to work on the tone but it's more along the lines of compensatory strategies versus making them stronger. But starting therapy young is key and it's great that you are on it.

[Anonymous]

My nephew had low tone/hypotonia and entered Early Intervention at 18 months. Graduated at 3 and is now 11 and perfectly ordinary.

DD had the same issues and we enrolled her in EI thinking she would have the same outcome, but unfortunately she is still disabled, now in 3rd grade.

You just don't know.

[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?

He was lateish with everything...sitting at almost 8 months, crawling at 11 months, walking at 17.5 months. Now we know why.

[Anonymous]

My child (8) has low muscle tone. He was late to sit, crawl, walk. He had Physical Therapy from age 10 months until 5 years when he met all the goals on his IEP. He has had occupational therapy 10 months - current. He was a late talker. Difficulty swallowing, constipated. He no longer has PT at school, but I require he get the type of exercise which makes him stronger. 1) martial arts weekly 2) swim lessons weekly. It took a long while to learn to ride a bike, but in good whether, we go out biking on a regular basis. He will never be good at team sports, at least our developmental pediatrician says to stay with individual sports. He is getting his purple belt soon -- he takes all classes with typical kids and it takes longer to get to different levels.

The best thing is he truly likes physical activity. He can't keep up (running) with his peers, except overweight peers. He can keep up with kids 2 years younger than him. His endurance is low, but we make him do things (within reason) that we think he should be able to do. He hikes, likes to play outdoor games, cross-country skis (only likes this a little). His balance and coordination have improved greatly, but not as good as typical kids.

[Anonymous]

Anonymous wrote:My child (8) has low muscle tone. He was late to sit, crawl, walk. He had Physical Therapy from age 10 months until 5 years when he met all the goals on his IEP. He has had occupational therapy 10 months - current. He was a late talker. Difficulty swallowing, constipated. He no longer has PT at school, but I require he get the type of exercise which makes him stronger. 1) martial arts weekly 2) swim lessons weekly. It took a long while to learn to ride a bike, but in good whether, we go out biking on a regular basis. He will never be good at team sports, at least our developmental pediatrician says to stay with individual sports. He is getting his purple belt soon -- he takes all classes with typical kids and it takes longer to get to different levels.

The best thing is he truly likes physical activity. He can't keep up (running) with his peers, except overweight peers. He can keep up with kids 2 years younger than him. His endurance is low, but we make him do things (within reason) that we think he should be able to do. He hikes, likes to play outdoor games, cross-country skis (only likes this a little). His balance and coordination have improved greatly, but not as good as typical kids.

THis is my DD - she is now 13 years.
SHe did not roll over til after she was a year old. Walked at 16 months. Did PT for several years. SHe was constipated and has such an easy-going personality that she really didn't care to move. She was so content just to sit and watch or play quietly with her Barbies.

We are an active family so we walk/hike in the nicer weather. We have a gym membership which has a pool. SHe took lessons for a few years and she swims (plays in the pool) for fun. I recently got her interested in running on the tread mill with me. SHe plays rec league soccer since 1st grade. She is a bench warmer but loves being part of the team.We'd love to start skiing as a family but she dislocated her knee cap 1.5 years ago playing soccer when she simply stepped wrong.
She is uncoordinated and slow with anything requiring movement. After a neurophych eval, she was dx with executive functioning disorder.

SHe is the kindest, most thoughtful person I know but it breaks my heart how her peers just catch on to stuff so much faster. Low muscle tone and EF disorder compound her slow pace of life. I hope she'll find her people and pace of living as an adult. DMV or other large areas will just steamroll her.

[Anonymous]

When my son was diagnosed with low tone, I said "no, he is just like me." It's my normal, so it took me years to realize I also had hypotonia. I think there is a genetic component to it. When I was a kid, everyone just said I was clumsy, bad at sports, lazy, etc. Now my son with years of PT has surpassed me in physical skills. He doesn't think he is clumsy or bad at sports or lazy. To sum up, a good PT and OT are priceless. Be happy, OP, because this condition is so treatable!! And even though my hypotonia is untreated I have still turned out OK, happily employed in a desk job.

[Anonymous]

Anonymous wrote:When my son was diagnosed with low tone, I said "no, he is just like me." It's my normal, so it took me years to realize I also had hypotonia. I think there is a genetic component to it. When I was a kid, everyone just said I was clumsy, bad at sports, lazy, etc. Now my son with years of PT has surpassed me in physical skills. He doesn't think he is clumsy or bad at sports or lazy. To sum up, a good PT and OT are priceless. Be happy, OP, because this condition is so treatable!! And even though my hypotonia is untreated I have still turned out OK, happily employed in a desk job.

OP here.
Interesting that you bring that up- I have always been notoriously unathletic. I hated PE in school (couldn't get the ball over the net, the slowest to finish races, etc.) but did do fine in dance. I loathed sports and competitiveness. As an adult, I exercise daily so am fit and toned (weight lifting, cycling, jogging, Pilates, etc.) and otherwise have no problems.

[Anonymous]

In the same boat. A DS with hypotonia and other disabilities and I have also been wondering about this (the genetic component). Is this a thing that was not commonly diagnosed 30 or 40 years ago? I am really, really atrocious at sports, was miserable in gym in school, refuse to play any kind of ball sports. When I discovered individual exercise at the gym in my 20s it was like I was able to enjoy my body for the first time. I'm in pretty good shape now but was miserable during the team sports years.

[Anonymous]

My DS (10) has low tone and motor planning issues. I've worried like crazy over the years about whether there would be other issues, but he's a super bright kid that excels in school, shy (which I sometimes wonder if was exacerbated by the tone issues) but has made good friends, funny etc.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:How did they diagnose low tone? It doesn't sound like your child has the typical markers – isn't floppy, example.

I'll only throw this out there, take it with a grain of salt. My pediatrician insisted when my third child came in for her four-month checkup that she had torticollis, or a head tilt. I had never noticed a thing, and I have two others kids who have had varying degrees of all kinds of little bumps and quirks throughout their young years. She said she would evaluate again at 6 months. I never saw a single indicator of what she was talking about, and mentioned it again at her 6-month checkup, as in, I still hadn't noticed anything. I even looked at old photos, saw nothing. She agreed with me, then cocked her head, looked at DD again, and said, "Nope, I still see it. Have her seen by Infants and Toddlers."

Now, given that my son had speech therapy with ITP as a toddler, I think they're great, but I really did not think this baby needed physical therapy. But when I tried to politely decline, she basically threatened me – said that she would know from records whether I actually called them or not. I went home and called ITP and they came out. Happily declared, with the PT in tow, that she was the healthiest and happiest on-par baby they had seen and told me not to worry about a thing, she was perfect.

I promptly changed pediatricians later that afternoon.

Please please share the name of the pediatrician. We all need to avoid this person

[Anonymous]

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.

[Anonymous]

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.