My Clumsy Kid: Hayden's tale of low muscle tone (Hypotonia)

I have wanted to share my son's story for some time now.  Hayden is turning five years old in a couple of weeks.  I recently found a great Google group to share our experiences.  If any of you reading this have a similar story, please feel free to join us!    

After a very normal pregnancy, Hayden's birth was much rougher than I could have imagined.  After twelve hours of induced labor and two and a half hours of pushing, Hayden ended up having an “assisted” delivery (I was only one push away from having an emergency c-section) but with help of forceps the doctor managed to get Hayden out.  He wasn’t breathing at first, but quickly recovered.  Looking back, I think he was born with low muscle tone and it probably contributed to the rough birth.  (Our physical therapist has also mentioned that the rough birth might have caused the low muscle tone.  It’s a bit of a chicken-and-egg thing – which came first? 

Hayden’s condition has always been borderline.  It is still not immediately apparent to most people (though more apparent the older he gets and is around other children).  Being his mother, I always knew that something was different with him and it took four years to get a professional diagnosis of low muscle tone (hypotonia).  Even now, it’s still confusing as low muscle tone is really a symptom, not a disease or condition (as stated by the pediatric neurologist we just saw).  Hayden doesn’t have a disease, thankfully, and his “condition” isn’t degenerative – he is showing some improvement with growing older and physical therapy, and his tone isn’t getting worse.  It’s just pretty much staying at the same level for him.  (More about that later.)

Hayden wasn’t really a floppy baby, but he did feel much heavier than other babies his age (even though they all weighed the same).  He did not support his weight as well, and was content to lay or sit in one place for a long time (keeping busy with his hands).  He has a large head and we assumed that he had more trouble than most supporting it.  He sat up around 7-8 months, but fell over often.  He didn’t crawl until 11 & ½ months or walk until 13 & ½ months – nothing too far out of the norm.  He always had a slack jaw and his mouth was open most of the time (he still is this way most of the time now).  It really wasn’t until the following year or two, when he was a busy toddler, that something seemed off. 

Hayden has always been “clumsy”.  I have affectionately referred to him as my Inspector Clouseau.  He has always tripped and fallen frequently, though it doesn’t seem to hurt or bother him much.  You can see that he’s going to fall a second or two before he does, because it’s as if his legs just give out from under him or he gets off-balance.  (Hayden’s balance has always been poor – it is very difficult for him to stand on one leg.)  His pediatrician always responded that he would outgrow it; that his bones were still moving into position from babyhood.  Everyone shrugged it off (except for me). 

Hayden was a healthy child, but when he did get a cold, it always moved straight to his chest and he ended up with one bronchial infection after another.  The doctors call it “cold-related asthma”, meaning he only gets asthmatic when he has a cold, not on a regular day-to-day basis.  In fact, Hayden doesn’t have any allergies or sinus issues.  As the years progressed, Hayden’s colds turned more and more quickly to upper-respiratory infections and even pneumonia.  (It got to where every time he showed the first sign of a cold we started him on Albuterol, and kept him on Flovent throughout the winter.)  Looking back, I think it was the low muscle tone which contributed to his inability to keep his lungs clear. 

Hayden was also delayed at writing and had trouble with his speech in articulating.  At almost five, he is finally drawing representational pictures (you can tell what the object is supposed to be), writing letters and his language has improved enough that we can stop speech therapy.

The main thing that alerted me that there was more to all of this, though, was his posture, especially when he is sitting on the floor.  Hayden has always hunched, but more from his waist than his back.  When he was three, almost four years old, and sitting in a circle at preschool, I was alarmed at how he looked almost doubled-over, folded in half!  The other kids in his class didn’t have perfect posture, but it was nothing compared to Hayden’s posture! He also “cheats” when sitting on the floor and playing with toys, in that he almost always has one knee up supporting his head and chest (instead of making his muscles do the work). I decided that it was finally time to seek another professional opinion.  I called a local children’s physical therapy office and asked if we could get an appointment to have Hayden evaluated. 

The physical therapist took one look at him, and said she could see it right away.  His low muscle tone was especially apparent in his face (the slack jaw, hanging cheeks, etc.) and in his chest (which has always looked inverted).  She asked his to raise his arms over his head and pointed out how his rib cage moved with them, instead of staying in the same position as it should.  She had Hayden lay on his stomach and try to keep his chest and head off the ground while doing a puzzle or reaching for a toy.  After only a few seconds, his abdominal muscles couldn’t support it anymore.  Watching the evaluation, I couldn’t believe how obvious it seemed.  It was more severe than even I had realized (though certainly mild compared to others physical disabilities).  Still, I was so relieved to have someone else finally validate the concerns that I had been expressing for so long that I broke down in tears.  Now we had a name for it and more importantly, some understanding of what it was and what to do about it.

Hayden has been in physical therapy for just over a year now, going once a week.  While he has made improvements, his gross motor skills are still of someone almost half his age.  We consulted with a pediatric neurologist earlier this week, and even, it was a relief to know that he doesn’t have anything more serious than low muscle tone.  He is growing and developing at his own rate, and not regressing, which would be cause for a lot of concern.  As the neurologist put it, we probably don’t have a star athlete on our hands, but we never have wished for that.  He will excel in certain things, but physical sports probably won’t be one of them (though the doctor felt he would probably take to swimming).  Moving forward, my husband and I will make sure that Hayden gets plenty of exercise and continues to be a happy, healthy, active boy.  I have found toys and activities to help him develop the gross and fine motor skills where he needs improvement.  I also continue to bolster his emotional strength and self-confidence.  I have witnessed his sadness and frustration at not being able to keep up with his friends at school.  The boys at his preschool like to run laps around the playground and Hayden can only keep up with them for about ¼ to ½ of a lap before he needs to stop or lags way behind.  He sometimes starts sobbing, thinking that they are running away from him.  It stabs me right in the heart, this emotional pain that he sometimes experiences, but I know that every child experiences it at times.  Hayden is such a loving, funny, wonderful child and I will help him to realize that everyday.  I will redirect or refocus him away from his limitations, and we will concentrate on his abilities, interests and most importantly, his joy.  I hope this post helps those of you who are going through the same things, or maybe are just starting out with younger children.  Trust your instincts.  You know more about your child than ANYBODY ELSE!  Persevere, do your research, talk to others, find support and be your child’s best advocate!

Comments

[Kirillee]

OMG I just found your post I feel like you have written close to my story of my 4 1/2 yr old. I have always felt there was something different. Although socially you couldnt ask for anything more, his speech has given us grief. Although we are waiting to see paeditrition for formal testing/diagnosis an early intervention educator has recommened we get tested for low muscle tone. Do you have any advice in regards to what tests we should be having or anything in particular I should be taking note of before we see the Dr... I am so relieved to read your blog..
Regards

[Teddi Yaeger]

Im so glad you found it helpful! I have heard from others who found this blog entry as well, and it makes me feel
great that it has helped get them closer to some answers. If you can, I recommend seeing a pediatric neurologist
(there arent many out there) to rule out a neurological cause for the low muscle tone. This can be helpful if for no
other reason than you might need to provide that information to your health insurance provider. (Our health
insurance company dropped our sons physical therapy coverage because he doesnt have an injury or disease.)
Also, when you go to see a doctor, provide them with your sons physical history (such as I wrote here on the blog).
It usually take a doctor or physical therapist to diagnose low muscle tone, and if one doctor blows it off, see another
or a physical therapist for sure. Good luck, and keep me posted on your progress!

[coach handbags]

How many people actually have 8 true friends?Hardly anyone I know.But some of us have all right friends and good friends.

[Civilaswewannabe.blogspot.com]

oh my gosh! you are so incredibly lucky that you actually received a diagnosis while he is so young!

My 10 year old daughter was diagnosed with dyspraxia and hyptonia in JUNE!!! I've been expressing concern about her poor handwriting and the fact that she has broken the same elbow 4 times through clumsy accidents for 6 years! The last time she broke her elbow, the police were called! I now have to carry around a letter from her orthopedic surgeon stating that she has a fragile elbow!

Anyway, much support to you and your son. He is getting what he needs at the age he needs it.

[Heather Bogart]

My son was just diagnosed with low muscle tone, a speech delay, and he has a large head. He is 16 months old. He has droopy cheeks, and a slightly slack jaw. Your post describes him to a tee. The doctors suggested he should be tested for a syndrome by a geneticist. I know in my gut that he doesn't have a syndrome, I have searched the Internet and all the syndromes out there, and he is always missing a major determining characteristic that is required for diagnosis. I am so glad to hear your story and know that Hayden, while struggles physically, still has normal intelligence. Whenever there is a speech delay, there is always that concern. Thank you for this post!

[Teddi]

Heather, I'm so glad that you found my son's story, and found it helpful. Hayden is now a very happy, busy Kindergartner and though he is still slower and clumsier than other kids, it doesn't phase him anymore. In fact, his teacher and the recess assistants never noticed anything different until I mentioned it. We did see a pediatric neurologist, who ruled out any disease and determined it to just be congenital. The main thing to watch for is if your son's condition seems to be getting worse. It may be more noticeable for a while as he gets older, but as long as he isn't getting worse, there is probably no cause for concern. Did your son have a traumatic birth? Mine did, which they said may have caused the low muscle tone or he may have already had low muscle tone, which caused the difficult birth.
Anyway, please stay in touch and I wish you and your family all the best!

[Heather]

Thanks Teddi,
Sorry this took so long to answer back. My son had a semi normal birth. It was very long, but so was my daughter's. He had the cord around his neck and didn't breath for what seemed like forever. The doctors said his apgar scores were fine after that, but I always wonder. We are seeing a dt and soon a speech therapist. Otherwise, healthy and happy! Thank God for early intervention through the state. They have been wonderful and much more informative than our old Ped. I recently switched to a developmental Ped. Wow what a difference. He has a thorough understanding of delays. Wishing you the best. H

[Nerissa]

Thank you so much for sharing. My son just turned 4 and has low muscle tone. It was first noticed when he was 6 mos old. The Doc's thought he had spinal muscular atrophy but thank God the tests came back negative. He is now doing well but I can tell he is still lagging behind. He too is very clumbsy and has trouble with balance. I had a rough pregnancy with him. I had pre-eclampsia and was given Magnesium Sulfate during labor. I am suspicious of the Magnesium as if you look at the side effects of Magnesium Sulfate on an infant right at birth, one of them is hypotonia. I have asked all the Docs about this and they said the hypotonia would only last a few days in an infant given Manesium Sulfate, as their body processes it out of their system. Unfortunately I have spoke to 4 other mothers whose chidren all have low tone at an older age and the mothers were all given Manesium Sulfate before birth. Coincedence or not?? I'm not sure but not a day goes by that I am not filled with worry for my son. I don't want him to feel bad about himself in any way. I am afraid of what the future holds. I don't want him to be picked on. I hope as he grows he continues to improve. It seems his tone gets worse with any type of cold or bug. Low tone is something a lot of people have never heard of. I am sure there are lots of kids out there with the same problems and no one ever thought of low tone being the problem. Thanks so much for your story. It is comforting to know someone else knows how I feel.

[Michelle]

Hi Teddi - just stumbled onto your site. Would you mind sharing the drs. and PTs you used in the Seattle area. My little guy Tagg was just prescribed PT for possible hypotonia by our primary care. He's 3 1/2 and your story sounds so similar. We're down in the Greenlake area. Thanks so much.

[Christan]

When I got to the part in your story about how you felt that all the respiratory infections were due to the poor muscle tone I continued to read, but when I got to the part about how Hayden was sitting on the floor I let a couple of tears drop down because that is EXACTLY how I feel about my son. He has had chronic respiratory infections for the last 9 months and has low muscle tone but his physical therapist just decided that his muscle tone is more inconsistent. Reading your post made me think about the challenges we have ahead but makes me so happy to think about all the things that our Children will excel in! Loved reading your story of Hayden, Thank you for sharing!!

[muscle gaining secrets review]

Low muscle tone refers mainly to the distribution of muscles on the body, their initial state, speed and stamina. The affected muscles can be "trained" but that training won't come from sport or from and normal gym/weight training. It comes from some very specialized training - and it won't be 100% effective. In young children, the problems of low muscle tone will reduce in severity as they get older - up to about the age of 10, though aspies will likely continue to adjust and compensate for the rest of their lives.

[Hannah]

I just found this post while looking up Hypotonia. My son is 18 months and was just diagnosed with this 2 days ago. It is encouraging to hear how well your son is doing. It gives me great hope for Gabriel as right now I am going through the "I am a horrible parent and I must have done something wrong!" phase. My heart is breaking right now for him b/c he is the sweetest and most loving little boy and I hate that he will have to go through this. He is getting fit for "Sure Steps" this coming week to help support him as he walks and we will start PT in the couple of weeks and Speech Therapy this week. Thank you for sharing your story!

[AM]

Thanks for posting. I am in the same situation with my son.

[Js Mom]

Thank you soooo much for this post. For over a year I've had concerns about my now 4 1/2 year old. Although not identical, our stories are very similar except for the diagnosis. My son was in early intervention speech therapy for articulation and he went through some occupational therapy to help him strengthen his core. He aged out at 3 and was deemed not severe enough to qualify for any additional services after that. His speech has improved greatly thankfully but small motor still needs work (cutting, etc) He too has cold related asthma but they just call it a asthma or a sensitive airway since his dad had asthma. They way you explain it possibly having something to do with low muscle tone seems so possible. He is on a daily dose of Flovent. He only has issues after catching a cold. No allergies or typical symptoms.
I've brought up what I perceived as low muscle tone to the docs and it is always dismissed as..that's just him. In their opinion, he's just small..same deal about not likely to be a star athlete but nothing to worry about. He was slow to write and draw but is doing much better. He runs and plays normally but anytime he needs to do things with his upper body..he uses his body instead of his arms. Carrying things, moving things, etc. and he constantly slumps when seated. We have been to a pediatric neurologist who didn't even examine him. It took MONTHS to get the appointment, we get there, wait hours then he asks a few questions, looks at my son and says he will get stronger as he gets older. REALLY? UGH! Most think I should be relieved, which I am that there is nothing serious but I feel like what is there is being disregarded. In any case, thank you so much for sharing your story and for your encouragement to persevere! I will! You are right! I don't claim to be a medical professional but I know when something is not right.

[Teddi]

I'm so glad to read that everyone has found this post helpful. I haven't continued this blog but keep it online because it is coming up in search results. Hayden is now a 7-year-old first grader and doing really well. He receives physical therapy at school, and has a couple of special "seats" that he uses in class to help support his weight and train his muscles at the same time. He doesn't let the hypotonia stop him from playing with his classmates, or from completing physical challenges. He is always the last one in from running laps, but he finishes them! He had a great time over the summer taking swim lessons and we took gym classes at a wonderful place called Great Play! There was even another boy in his class with hypotonia. The two looked so similar when they moved! I still describe Hayden as the Scarecrow from The Wizard of Oz - when he walks or runs, gravity starts pulling him down and he'll stop and correct himself and keep going! He still can't ride a bike, but he loves to ride his scooter (not a Razor scooter - that didn't work for him at all, but the Micro Scooter I have posted here on the blog under toys). He hasn't had issues with the cold-related asthma much - the doctors had said that because it started before he was three years old, he would probably outgrow it and it seems that he has. Anyway, I'm so encouraged by all of your stories and by the fact that you are finding this blog helpful! Keep advocating for your children - if your doctor blows it off, find a new doctor! Thanks, everyone.