Helping a child with high muscle tone – Hypertonicity in a child
(aka: stiff baby syndrome)
This post is for those of you that have heard the diagnosis of hypertonicity in a child or high muscle tone. This post will not pertain to everyone or even to very many, but if it helps even one family, I will be so glad. I wanted to share about hypertonicity (also known as Stiff Baby Syndrome, hypertonia, or hyperexplexia).
Our son, born in 2008, is hypertonic and when he first got this diagnosis (at two months of age), I was completely in the dark about it. I want to give a little insight into hypertonicity and what you should be doing about it if you learn that your child is hypertonic. It is a scary time, so I want to shed some light on this for you and tell you exactly what steps to take to have positive results.
What is hypertonicity?
Hypertonicity is when your muscles are extremely tight (your brain & nerve cause it). It is not just a physical problem. It is a nerve and brain issue, too. Our son that has hypertonicity was not able to get his arms over his head as an infant – image putting your arms up, bent at a 90 deg. angle and you can not raise them above shoulder level. Your arms will be at 90 degrees, but no more.
This was our son.
Even with help and therapy, it took over a year to be able to stretch his muscles and relax his body enough to allow us to stretch his arms above his head, something that we take for granted every morning or every night when we stretch before or after a good night’s rest.
He was over a year before he could get his toes even close to his little face… the cute thing that babies do so naturally!
Here are two pictures that show how his body would stay… you can see that my husband barely has to hold him and he wouldn’t move. His body was stiff… almost statue-like.
The ONLY time that his muscles were relaxed was when he was asleep. (He was a very light sleeper). This is also the only time that he could eat without vomiting, if we could feed him during his sleep. He vomited constantly.
My husband defines a hypertonic body to be similar to a young tree- it has just a little give, but you know that if you bend it too far, it could break. This was his little body… His body was like a brick or a board. He didn’t bend well, he couldn’t rotate his torso. This is what hypertonicity looks like. Our son also vomited every meal, but they aren’t sure if the issues were related of not. I think that it was… if the outside of his body is this tight, why would the inside be any different?
His shoulders were ALWAYS in this position as an infant & toddler… (raised up like you would do to mimic the phrase “I don’t know”)
What do you do hypertonicity?
GET THERAPY AS EARLY AS POSSIBLE!!! You can go to a private therapist or go to your state’s early intervention program (usually on a sliding scale or free). Find how to to go about finding therapy with this post: What is play therapy?
Children have the capability to re-route their brains if they begin therapy early enough. They can re-teach their body. Get therapy and get it now. We started therapy at 2 months of age. He was in therapy for four years.
His first two years, he had therapy 3-5 days per week. Now, at age 5, he has therapy twice a year, where they give us ‘home therapy’ suggestions. He is still tight (it comes off as being very, very strong), but he knows how to use it to his advantage instead of letting it define him.
We enrolled him in wrestling in Kindergarten and it allowed him to figure out the techniques and learn that he is allowed to really use his strength… his opponents better watch out. (ps- I am his biggest fan… can you tell?). (Over the years, he has won several gold medals)
DO STRETCHES AT HOME:
Stretch your child at home. Do exactly what the therapists tell you to do. We used to stretch him about 4-5 times a day, we taped him (taped his shoulders down), we did the massages that were suggested.
A massage can be painful to a child with hypertonicity. Every single touch would make him jump.
I would do massages several times a day.
He began to enjoy them (or tolerate them) a little more around five years of age, but even now, he still tenses when I try to massage his shoulders and he still tells me that it hurts sometimes. (He does love back scratches!) He is VERY sensitive to textures – tags, blue jeans, shirts that aren’t soft… these things all bother him, but if that’s all that we have to deal with, its not a big deal. My mom has gifted him so many of those silky/soft work-out shirts (the material for exercise shirts are perfect!). He has several sensory issues.
DO JOINT COMPRESSIONS:
This is such a key factor with hypertonicity. Do joint compressions. We did 10 compressions per joint 3-5 times a day. We did this for over 4 years. (If you don’t know how to do them, look up a video on google or youtube and see how to give your child these joint compressions at home).
We had our son on a LOT Of prayer chains. They told us that he may have cerebral palsy, or may have had a stroke, but that they wouldn’t know until he was older. They said he may never walk, crawl, run…
He doesn’t have cerebral palsy. He does walk, crawl, run, jump, skip, play… Read more about why we teach them to JUST LOOK UP!
In the end, be sure that you do something about it now.
WHAT TO DO RIGHT NOW:
Don’t wait a week, don’t even wait until tomorrow.
1- Call your local neurologist and make an appointment. (You may need a referral from your peds office)
2- Call your local Early Intervention office and request these things: Physical Therapist, Occupational Therapist, Play therapist (this is what I am, but not every state has it). They will come out to do a free evaluation (check to be sure that this is true in your state).
3- Look up stretches at home
4- Look up massage techniques for baby massage and start that every day because hypertonic children tend to have sensitivities and sensory issues. Massage will help.
I hope that this was helpful. I wish that I had known even a little bit when we started, but my hope is that you can use my experience to help your child.
Here he is at nine:
♥ If you want to learn more or talk, join our facebook group for parents of children with high muscle tone (including CP & more). ♥
****** I HAVE CREATED A FACEBOOK GROUP FOR PARENTS OF CHILDREN WITH HIGH MUSCLE TONE… YOU CAN REQUEST TO JOIN IT HERE.******