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!
An update from October 2011:
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.
And finally, an update today (April 19, 2012) in response to a new email I received from a reader:
Hayden is turning 8 years old next month! He's a happy, busy boy who doesn't let his low muscle tone stop him from playing and being active. He does receive physical therapy at school, which is a relief as our health insurance wouldn't cover his therapy outside of school because he doesn't have an injury or disease. He has a special "pad" on his chair that he sits on to gently work his muscles and improve his posture while at his desk. So far he is able to play most of the games in gym (physical education) at school but we tend to shy away from sports outside of school for now. He still cannot pedal a bicycle but he loves riding his scooter and he does well at swimming. He loves throwing balls, and wants to learn soccer. He is tall and thin, and gravity still likes to pull him down often. He recently sprained his thumb playing a game at school, but usually just gets a few scraps and bruises. He does get tired easily, and by the end of the school week, he's exhausted. We try not to schedule too much for him outside of school.
Fortunately, he did outgrow the cold-related asthma! Now he recovers from colds pretty much like any other kid. His doctor told us that kids whose airways are over-reactive before the age of three usually outgrow it, and it appears that he has. Hayden is getting fit for orthotics finally! Unfortunately the podiatrist he saw when he was three told us to wait, that it wasn't necessary to start him wearing orthotics so young. I have since read articles about how kids with hypotonia should start wearing them from about the time they learn to stand on.You will want to look into it for yourself, if you feel that they could help your child.
I have recently found some good information about it on the "Live Strong" website. Here's a link to their information, which even includes some information on nutrition (which I've never seen before): http://www.livestrong.com/hypotonia/
I hope this helps. Keep trusting your instincts!
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, and they are made from coconut milk and fruit purees. Our favorite is the Coconut + Mango. (They sell in the retail stores I mentioned for about $4-5 per box.)
