Low tone Questions....

[3monkeys]

Can someone explain to me what low tone is?

How it presents itself in childhood?

How it relates to learning difficulties?

Lastly, can exercise eventually solve the problem?

 

I suspect it with my 9 year old but never knew it had a name. How do you get dx and if so, then what?

 

[IdahoHomeschooler]

Talk about your concerns with your child's doctor, and they can refer you to a developmental specialist, like an Occupational Therapist (OT) for diagnosis. Exercise can help, but tone has more to do with the brain telling the muscles how taught or loose to be, rather than on just developing muscle strength. If you can picture different types of springs, like a slinky or a clothespin. Some springs are very loose and easily stretched out, while some take a great deal of strength to get to move. Muscle tone has a range, with some people having such poor tone that they can't even sit upright without being propped up. Sufferers of traumatic brain injury, cerebral palsy, stroke, etc., can all have very poor muscle tone. The same types of insults can also cause the brain to go the other way, and these people develop muscle contractures, or are unable to walk because the muscles are soo tight that they almost become bent over. There is a wide range of tone, and various things affected. In children, learning can be affected in a number of ways by poor/low muscle tone. A good OT, and probably physical therapist (PT) can diagnose and treat muscle tone issues a variety of ways, as well as offering tips and tricks for adapting activities to individuals with low muscle tone.

 

Not sure how helpful that I am, lol. I work with babies, and many of them have muscle tone issues. The OT/PT's work very closely with us in identifying and offering therapies to at-risk babies, so that is where I come from. Hopefully, a homeschooling OT or PT will come along and offer a better explanation than me ;)

[GoVanGogh]

:bigear:

Interested, as well.

 

Our premature DS was dx with low tone at birth. We were given exercises to do and later it was suggested we put him in a small 'gym' program. (Can't remember now, though, why the doctor recommended the gym - balance, coordination or tone.) Over time, the doctor quit mentioning it and I guess we never thought more about it, as DS had so many other pressing health issues.

Fast forward: DS was dx last fall with mixed tone issues. His body varies between high and low tone - some areas always low, others always high, others flipping between the two based off neurological input.

 

I do know with DS that he can run (be active) for long periods of time, but has problems standing in place or sitting. He wants to lay down for school all the time.

 

How it can relate to school - take penmanship, for example. You use muscles through your torso, shoulders, upper arms and lower arms/wrists when writing. If you have low tone, it is exhausting to pull all those muscles together to actually write. In my son's case, he pulls in muscles through his hips and legs to stabilize his core when writing. (He does have the mixed tone, though, and his hips and upper legs are always high tone, so his situation may be unique to his condition.)

 

He also had eye surgery, related to tone issues - though eye surgery was years before tone issues officially dx. That, obviously, can inpact education considerably.

 

DS is in OT and PT for (among other things) tone issues. My son's case is life-long. I do not know if typical low tone is 'cured' or if it is always an issue.

[AviatorJJ]

VanGogh check out Mommies Little Miracles (preemie moms only) on Facebook. We'd love to have you join us! Low muscle tone is called hypotonia. People with it put forth 7x the amount of energy to get their bodies to do what "normal" people can do. They tire easily and can have dysgraphia (handwriting).

[Crimson Wife]

A neurologist would be the one to evaluate for low tone. Acetyl-l-carnitine and Coenzyme Q 10 helped my youngest with her hypotonia as did increasing her consumption of coconut milk & coconut oil (which have medium chain triglycerides). MCT oil is supposed to be even better but it is expensive.

[GoVanGogh]

VanGogh check out Mommies Little Miracles (preemie moms only) on Facebook. We'd love to have you join us!

Thank you for the info. I enjoyed looking over the blog. I feel so far removed from our preemie days, but that is haunting us now with recent diagnosis.

 

A neurologist would be the one to evaluate for low tone. Acetyl-l-carnitine and Coenzyme Q 10 helped my youngest with her hypotonia as did increasing her consumption of coconut milk & coconut oil (which have medium chain triglycerides). MCT oil is supposed to be even better but it is expensive.

Re: Neurologist

If possible, find one that specializes in neuromuscular movement disorders.

Re: Supplements

Thank you so much for the information! I am giving DS Coenzyme Q10 and coconut oil, but was not familiar with the others.

[sbgrace]

My son's hypotonia was/is metabolic. He benefited from Carnitine, MCT, and I assume he's benefiting from the coq10 as well. We use coq10 from Epic4Health only. It's the kind that raises blood levels and what geneticists use.

 

Hypotonia isn't, generally, correctable. But strengthening muscles can help with compensation. For us low tone goes with easy fatigue and gross motor issues primarily. My son's first signs were being a "floppy" baby and missed motor milestones as an infant/toddler. But I have low tone and didn't seem to miss any milestones. I had no clue I had low tone until my son was dx'd and the therapist pointed out my tone issues!

 

Some (many?) low tone people have issues with knowing where the body is in space, coordination, flexible joints, and easier fatigue. There are probably other things not coming to me.

 

Our geneticist thinks hypotonia always has an underlying genetic or metabolic cause....not always a "findable" one or worth trying to find. If there is also fatigue, though, I think metabolics/mitochondrial issues should be at least casually explored.

[PeterPan]

You don't have to suspect. Your ped can diagnose it pretty quickly. Diagnosing the *cause* and what you should *do* about it, that's more involved. But just to say yes he's low tone to some clinical degree, your ped can do that.

[IHaveNoIdeawhatIAmDoing]

My son was diagnosed with hypotonia when he was around 5 months old. It seemed to affect his whole body. He didn't sit up until he was a year old and he couldn't eat solid foods until he was about 15 minutes. He's 2 now and they're still trying to figure out what's going on with him, He also has macrocephaly and short stature (For height he is in the third percentile, for his head he's above the charts).

 

I hope you get some answers concerning your 9 year old!

[One of each]

Ehlers Danlos Type 3 is hypotonia caused by too much collagen in the connective tissues. My dd was seen by a neurologist first and then dx'd with EDS Type 3 by a geneticist at a Children's Hospital at 6 mos.

 

She received physical therapy til she was 3 yo. Today, she's nearly 10 and still is the slowest runner in PE class and is just now able to pull everything together to swim. She has to be careful to not over extend or do high impact exercise like gymnastics. We do wall pushups and planks and ball exercises to strengthen her core. As a baby she was so flexible she scratched the top of her head with her toes and today she can still lie on her stomach and touch the back of her head with her foot. But we don't encourage it because it'll make her hip and ankle joints pop (not dislocate, but like when you crack your knuckles.)

 

She has no learning difficulties and is doing very well school wise.

[Crimson Wife]

You don't have to suspect. Your ped can diagnose it pretty quickly. Diagnosing the *cause* and what you should *do* about it, that's more involved. But just to say yes he's low tone to some clinical degree, your ped can do that.

 

 

Our general pediatrician told me that it is easy for her to diagnose low tone in an infant, but with older children it can be tricky so she refers them to a neurologist. We moved to the area after DD2 was already a toddler so our pediatrician hadn't seen her as a baby. Our previous pediatrician hadn't mentioned anything about low tone but DD2's motor milestones had been at the tail end of the normal range so I don't think it was on anybody's radar to be checking. DD1 hit her milestones early, so it's possible that was the baseline from which DD2 was delayed by the hypotonia.

[GoVanGogh]

 

 

Our general pediatrician told me that it is easy for her to diagnose low tone in an infant, but with older children it can be tricky so she refers them to a neurologist. We moved to the area after DD2 was already a toddler so our pediatrician hadn't seen her as a baby. Our previous pediatrician hadn't mentioned anything about low tone but DD2's motor milestones had been at the tail end of the normal range so I don't think it was on anybody's radar to be checking. DD1 hit her milestones early, so it's possible that was the baseline from which DD2 was delayed by the hypotonia.

 

Thank you for posting, as I was wondering about pediatricians catching it. Our ped said DS had low tone as a baby, common for a preemie. She quit mentioning it and it fell off our radar while dealing with other preemie issues.

Even though I had asked questions related to DS's tone (without realizing my questions were related to tone) over the years, it was never again mentioned or looked at.

Our occupational therapist (owned her own facility for 30 years) said she has never had a pediatrician catch tone issues past the newborn stage, so I was curious to know other people's experience. The two pediatricians our son saw both failed in catching it (DS does have mixed tone so a bit trickier to dx on one hand, easier to notice oddity on other hand.)

[PeterPan]

I specifically *asked* the ped to look at her tone (age 12 at the time? I forget), because we were getting the referral stuff in order for OT. Yes, she wanted to send her to a ped neurologist. I looked at the cost, the types of labs they were going to run, whether anything was actually going to change in our case (we've already pursued carnitine, etc. and understand there are possible metabolic issues), and we declined. Not that everyone else should, but just disclosing what we did. In any case, yes the ped could see the tone just fine and was cool with diagnosing it and writing the referral for OT. She can walk, no ehlers danlos or cp or anything like that.

[GoVanGogh]

I specifically *asked* the ped to look at her tone (age 12 at the time? I forget), because we were getting the referral stuff in order for OT. Yes, she wanted to send her to a ped neurologist. I looked at the cost, the types of labs they were going to run, whether anything was actually going to change in our case (we've already pursued carnitine, etc. and understand there are possible metabolic issues), and we declined. Not that everyone else should, but just disclosing what we did. In any case, yes the ped could see the tone just fine and was cool with diagnosing it and writing the referral for OT. She can walk, no ehlers danlos or cp or anything like that.

The bolded part is specifically what DS is now being monitored for. :crying: We go back this week for more evaluations. (Doctors wanted to see how he progressed with therapy before making final decision.)

It just blows my mind that he was screened specifically for this as a toddler and we were told he didn't have any developmental delays, so no concerns. We didn't see any delays until around age 8 (now know that he leap-frogged over many developmental milestones) then could not find a doctor to listen to our concerns since DS is high-IQ. First pediatrician was convinced it was autism. Second thought it was OCD-ADHD mix. Neither would look at muscle tone or even consider that something was missed earlier. We didn't specifically ask as we thought it (the bigger dx) was ruled out years ago and - well, the mixed tone looks so different than straight low tone.

[PeterPan]

Neither would look at muscle tone or even consider that something was missed earlier. We didn't specifically ask as we thought it (the bigger dx) was ruled out years ago and - well, the mixed tone looks so different than straight low tone.

 

 

So just for my curiosity, you're saying some people are *mixed* tone? Now that's fascinating (in a horrible sort of way). So when you say mixed, maybe there's hypertonicity in some places or joints and hypotone in others? Or just average tone in some, hypo in others? And is it *only* associated with cp? Come to think of it, I may have talked with someone who is mixed who most definitely does *not* have a cp diagnosis. And sorry for the run-around you're getting. :sad:

[GoVanGogh]

Mixed tone can be from a birth injury, such as cp. It can also be an on-set/progresssive issue, which is a horrible medical condition. I am not sure if there are other reasons for mixed tone, though there may be.

 

When I asked our ped last fall (again) to look at DS's hands, he refused. I insisted on going to an OT, which he told me would be a waste of time. OT, within minutes of starting the eval, noticed the tone issue and a related issue. She sent us back to ped to get a referal for a neuro. At that point, ped examined DS's hands and said it was the on-set condition and sent us to a neuro. Neuro did MRI and full exam, plus looked over birth records and photos and said it was birth issue. At that point, our ped of five years copped an attitude and wouldn't even return our phone calls. He flat out refuses to accept that he missed this. It has been a long, awful ordeal. I am praying we get more answers this week.

 

Mixed tone is interesting. (I am seriously interested in doing something with this as a second career, once DS is grown.)

If a child is low tone, they generally miss developmental milestones.

If a child is high tone (rigid), they generally hit milestones early or on time, but in a stiff manner. (Ex: Flip over quickly instead of rolling over.)

But that depends on where the tone issue is, whether it is consistent or varied.

DS's tone issue varies - second by second, depending on task, trigged neurologically. His brain sends out uneven messages.

In a nutshell:

He is generally high tone on outside of feet, up through hips, which is why he walked early. But he is low tone on inside of feet, up through groin and core. He is genearlly high tone through shoulders, which is why he held head up early.

When he uses his hands independently and apart from each other (such as to type or play a piano), his hands appear mostly normal. (Which is how doctors would do an exam in the office or when they ask about hobbies... DS has gravitated toward hobbies that downplay the tone issues.)

When he has to use his hands together, at midline or in a grasp position (using scissors, writing, tying shoes), the tone issue in his hands kicks in and... odd things happen.

Now that I have sat through hours and hours of evaluations and examinations over the past year, I can see what it going on, when it kicks in, when it doesn't. It is fascinating. In hindsight, it now looks so obvoius. But a year ago, I just knew his hands would sometimes just flair out for no reason and I could never get the doctors to see it or get it to reproduce in the office. I had no idea it was a neurological condition! I am sure the ped thought I was nuts. And he thought it was an OCD trait, at the most, until the OT finally pinpointed what was going on.

 

(Edited to add: DS went through PT/OT/speech evals at 2, but - since he leapfrogged over certain skills - they said he used his hands in an advanced manner for his age. He had already picked his hand preference by this time, which I now know is a red-flag for muscle tone issues. But the therapists at that time were not concerned about it. From what neuro has said, this generation of preemies were thought to have done better and were just never examined in quite the right context. And - as an interesting side note - all of the neuros and therapists we have worked with say that DS uses his non-dominant hand to write with, as the tone is more stable in that hand. No clue what to do with that piece of information!)

 

At home - I noticed his penmanship was terrible, slow and wonky. And sometimes his pencil would literally fly out of his hands. Like one minute in his hands, the next flying through the air. DH thought it was a discipline issue. I didn't agree with that, but what the heck, you know?! I never thought to videotape it, as it 'just happens' and isn't something you can readily tape without knowing the triggers. That said, when the therapists asked if I had any pictures of it, I did have dozens of pictures - mostly taken opening Christmas or birthday presents, action pictures, where I took dozen of pictures quickly, then never really looked over the pictures closely to notice the hands. But I did have pictures - last bath at hospital, first bath at home - that show the tone issue in hands, probably in reaction to the water.

Obviously, it is mild or it would have been caught earlier! But there is certainly something going on. MRI showed the damage, which was consistent with his medical history and our current developmental concerns.

 

On a related note, there are other medical conditions that are attributed to tone issues, which DS had already been dx with and treated for - ex: failure to thrive, strabismus and umbilical hernia.

Back to the OP, strabismus (eye issue) can certainly affect academics and is related to low tone.

[AviatorJJ]

My son is 6 and was just diagnosed with learning disabilities so I know what you mean about thinking that the preemie days are behind you. I know it can happen to anyone but I can't help but think it is bc he was born 10 weeks early and had developmental delays. Grrrr! Darn prematurity!

[srs]

My DD was just dx'd with mild cp, dilpegia with hypotonia (hi, GoVanGogh! I know we have talked before about our similar issues). She has mixed tone as well, hips and I think feet are tight, the rest is pretty floppy. OP, you have been already given lots of good info about tone. From our experience, I would say that the tone itself doesn't cause learning challenges, but the issues and delays that come from tone can. And from what I can tell, possibly similar to the reaction with having a preemie, things can develop as a person ages not because things are getting worse, but because that is when the skill is developing (like you wouldn't know there is a problem with reading until early elementary age).

 

We got our first low tone dx from an OT, and we were eferred by our pediatrician.

[GoVanGogh]

My DD was just dx'd with mild cp, dilpegia with hypotonia (hi, GoVanGogh! I know we have talked before about our similar issues). She has mixed tone as well, hips and I think feet are tight, the rest is pretty floppy. OP, you have been already given lots of good info about tone. From our experience, I would say that the tone itself doesn't cause learning challenges, but the issues and delays that come from tone can. And from what I can tell, possibly similar to the reaction with having a preemie, things can develop as a person ages not because things are getting worse, but because that is when the skill is developing (like you wouldn't know there is a problem with reading until early elementary age).

 

We got our first low tone dx from an OT, and we were eferred by our pediatrician.

 

Did you change your screen name? (I changed mine a while back.) I can't recall 'talking' with you, but I feel like I have been in a fog for the past year. I would love to pm w/you.

We found out yesterday that he does/doesn't have CP. Does yes, but mild enough w/no cognitive impairment that they hesitate to write that on his medical chart where it could limit him down the road. So they are leaving his dx under a new medical term which refers to the tone issues but isn't widely known to be CP so doesn't have the stigma.

 

Re: The bolded part

That is why the doctors keep telling us that it is suddenly so noticable in DS.

As you age and grow, you have more mass to move so it starts affecting the muscles/tone differently. (In our son's case, what looked like a little quirk when he was smaller suddenly was 'in your face.')

Combine that with higher expectations and more skills building on possibly a wobbly foundation, where earlier milestones were met but barely or with struggles.

 

The doctors yesterday kept stressing to us that chlidren with tone issues can actually lose movement through the teen years, as tone changes so much with puberty/growth spurt if not addressed.

[srs]

I'm on a yahoo group for hypotonia, and the consensus there is that regardless of the underlying diagnosis, or if you can't figure it out, therapy is really the best medicine for hypotonia. Swimming and hippotherapy (therapeutic horseback riding) are supposed to be excellent.

[Tiramisu]

I found a nice site that goes over a lot, including the reasons it can be helpful to figure out why the hypotonia is there in the first place. http://msweiner-ivil.tripod.com/hypotonia/id14.html

 

I highly suspect we have family members on the spectrum of Ehlers-Danlos type 3 (hypermobility type)/joint hypermobility syndrome but only one had motor delays because of it. We've had a lot of writing problems though, which could be a combination of very mild hypotonia, lax ligaments, and sensory processing disorder.

[NittanyJen]

You are getting a lot of excellent advice here. Hypotonia may have many causes, and should be thoroughly evaluated. In my son's case, it turned out to be a genetic disorder-- in fact, he had the most common genetic arrangement involving a different number of chromosomes from the typical number-- 47,XXY (having a different number of chromosomes is called an aneuploidy, and having an extra X chromosome happens in 1/500 live births, which is more frequent than even Down's Syndrome! The male 47,XXY alone accounts for 1/667 live births-- but fewer than 30% are ever diagnosed in childhood in the U.S.).

 

Hypotonia can affect how much energy the child expends in simply sitting up straight in a chair-- you may find the child sits *very* erect, which may look fabulous, like he has the world's best posture, but he may really be sitting rigidly erect for fear of falling out of his seat. As others have pointed out, writing may be a serious chore, and hands can tire quickly. Going to the bathroom can be a challenge, and constipation can become an issue if the core muscles are affected (I am talking generally here, not specifically of my son-- I would never discuss his personal life in that much detail on a message board; but I am plugged into the XXY community and know of the varied effects that low tone can have).

 

It may sound surprising, but it can be a big relief for a child to sit on a physioball, hippity hop, or physiodisc that wobbles a bit instead of on a standard chair. They can bounce a bit to relieve the stress of sitting to rigidly, and they work on those core muscles a bit at the same time but not to the point of exaustion. Sitting on the floor for TV or "circle time" or reading together can be very uncomfortable, but sitting on a "peanut" shaped ball can actually be more comfortable and again work on those muscles. Writing on a slanted desk, easel, or even on the windows with window markers or on a wall or easel-mounted dry erase board can be more comfortable than writing on a flat surface, as can fatter markers or using pencil grips. Working on handwriting as a standalone subject can help, while providing scribing or dictation for academic subjects, so that any dysgraphia or simple hand tiredness does not impede academic progress or provide discouragement can help.

 

Definitely get an evaluation from a neurologist who specializes in muscle control, and request a genetic screening at the same time. There are many genetic causes of hypotonia (not just XXY) that can only be caught by this simple blood test, and the answers provided are not merely curiosity-- most of them have medical implications that are not scary, but should be managed appropriately as time goes on (like my son; he will have a normal, happy, typical life, but will need testosterone replacement therapy, and it's lucky we know ahead of time that he'll need it!).

[SunshineMom]

My dd11 was a premie, has cerebellar hypoplasia (affects motor skills/speech/emotional regulation) and likewise low tone. She began OT (every week) beginning at six months until she was three years old. We did daily exercises and used a pressured vest. She sat at one year and walked at two years old. She began swimming lessons at four years old. Piano lessons beginning at six for crossing midline (improves reading). We bought a large trampoline for her when she was seven years old and she began horse lessons at eight. We created our own OT environment with swimming, piano and horse lessons and a trampoline. She has become more coordinated and is strong but not able to participate in competitive sport leagues.

[Hwin]

My son has low tone and it's the heart of most of his issues. Even his hands are floppy - every three minutes he flings his pencil across the room because he just doesn't grip it hard enough. If I help him button his jeans, he just starts to leeeeeaan his body on me. I am going to start some bodyweight exercises with him to strengthen his core, and mine, but we don't qualify for any OT or PT, despite the physical therapist confirming my concerns.

[GoVanGogh]

My DD was just dx'd with mild cp, dilpegia with hypotonia (hi, GoVanGogh! I know we have talked before about our similar issues). She has mixed tone as well, hips and I think feet are tight, the rest is pretty floppy.

I remember that post now and went back and re-read it today. :seeya:

Yes, very familiar issues. We got our dx last week. It is odd. Everyone seems to think we should be upset. We are just so thankful we finally know.

I need to start a few ??? posts, as I am still a bit overwhelmed which way to go.

[nitascool]

My son has mixed tone. He had Failure to Thrive as an infant and was premature by about 30 days. Before he had FTT (before 6 months) he seemed fine. His milestones were actually early then he just stopped gaining weight and lost abilities. I now blame baby cereal (specifically Oatmeal) for this. Because now we see a serious sensitivity to wheat products... but now actual allergy in the strict definition of allergy.

 

He had so many issues with learning to crawl. One leg he held straight (rigid) while trying to crawl with the other. When he learned to walk he went from scooting to running in a few days. He bounced literally against walls. Once he was out of his high chair he fell out of chairs w/o sides. At every single ped. appointment I told the doctor my concerns about how he had no impulse control... he only 2, 3, 4, 5 was the response. He had bruises from head to toe, but that was to be expected with boys. At 6 I begged for a developmental evaluation because I was sure something wasn't right. She agreed only to shut me up. He had severe lows and highs in relation to tone. He's had lots of OT and very minimal PT.

 

Now @ 11 he has a perfect physique. He could pass for a professional swimmer he's got that awesome look. But the boy can't swim. He took 4 years to learn to ride a bike. He can't play sports because he can't coordinate well enough. He couldn't write because he grips the pencil to hard. We've finally gotten that aspect all worked out. After 5 years of OT and now the therapist tells us she can do no more to help him with writing. He can write two sentences at about a 4th grade level. That is two sentences that take him an hour to write. Nearly a year below grade level wise but well below grade level for volume.

 

So we went to a Psychologist to get help (accommodations) and he said that there was some kind of eye issue. He had already been prescribed glasses (we thought we had that covered). So off to yet another doctor to tell us how much more money we'll need to spend to help my son. He has Convergence Insufficiency which is a focus issue in the eye to brain category. It's treatable and is related to low and mixed tone issues. Why not? If you can have low tone in arms and legs why not in the eyes as well?

 

The Vision Therapist said she was surprised he can read because most kids with as severe CI can barely walk w/o running into walls and can't read for sure. All the things we saw in him at 2 are on the checklist, five of the 7 ADHD traits are on the list. He'll never be over his low tone issues, but with therapy he can learn to focus better with his eyes and eventually with his mind as well. Maybe one day he will be able to function well in his own body. We have seen improvement over the years. But it is slow progress. The OT told us that he will never not have mixed tone issues. They can only help him cope with his issues not cure them.

 

I guess I said all that to tell you If you Mama radar is up and you think your child has low tone fight to get that eval. even if your ped. doesn't see it.

[gg142]

some of you might like this article related to the relationship between hypotonia and a series of developmental problems. to me this made a lot of sense http://www.leonardkoziol.com/publications/hypotonia_2013.pdf