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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)
Here are our two oldest boys when they first started wrestling… They are 20 months apart & had a great time!
So what can you do RIGHT NOW?
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.
DO MASSAGES:
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).
PRAY:
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 is our child at five years old!
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.****** or click below.
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Did they get your son any equipment”? Stander? SMOs?
No – they almost did let braces but didn’t need to once he started therapy.
Hi Becky! Thank you so much for this post it was very helpful. I just left the Dr’s Office with my 4 month old twins. One of them is stiffer than usual and the other is softer than usual. I came across your website trying to find some more information about the causes. Our pediatrician didn’t want to expand as to not to worry us More than necessary. I appreciate it, but of course I got home straight to google. She said she would re-evaluate at our 6 month appointment. I noticed you had visited doctors in the Chapel Hill/Duke area. I am also in NC. Could you please give me the info. of your pediatric neurologist? I read he was very helpful. Thank you in advance!
Our neurologist was Dr. Jean-Ronell Corbier, but he left the practice. We were blessed to have had him as our son’s Dr. when our son was an infant.
Hcame across your page during one of my 3am anxiety/insomnia episodes over our 3rd baby. He is 4 months old and has been hypertonic basically since birth. We have GI and neurologist we are currently working with. We’re finally getting his reflux under control
But his muscle tone is very much so increased. We recently had a Brain MRI which showed “mild volume loss and benign enlargement of subarachnoid spaces(BESSI)”. From what we’ve learned the BESSI is an incidental finding and is something he will outgrow. Does not account for his rigidity and hypertonia. So far he seems to be developing ok (smiles, coos and rolls-since day 1, thanks muscle tone). We follow-up with neurology in 2 weeks to learn more about his MRI findings and where we go from here. I requested to join the hypertonia FB group. I am just desperate to reach out to and learn from as many similar mamas as I can. Thanks for listening and sharing your story!
Just found your blog post and I’m so glad I did! One of my 4month old twin boys has a high muscle tone in his limbs and low muscle tone in his trunk and neck. We’re waiting for our physio appointment and got reffered to get an MRI done but I’m having doubts about sedating such a young baby. Is MRI crucial at this point or is it possible to delay it slightly? And how was your experience with it? Thank you in advance!
We had an MRI done, but I was hesitant, as well. I do think that it is important, but that doesn’t make it any easier.
Hi there Becky!
I am an occupational therapy student doing some research for a project. It involves finding tips and tricks to help children independently dress themselves. I was wondering if you have any suggestions or tips to help children with a similar diagnosis to your son. My goal is to create a handout for parents and the kids to help them dress themselves at home.
Becky has a Facebook group you can join called ‘Hypertonic Children (high muscle tone, hypertoncity).’ This is a parents’ group, but if you are respectful and ask questions, I’m sure people will be happy to help you. 🙂 Please don’t DM people unless invited!
Its really helpful article, we have a 3.5 month old baby and on his visit of 2 month to his pediatrician to check his seasonal flue and cough he suddenly start crying during the examination. Dr. got alert and forget the cough and flue, he start investigating his uncontrollable crying, He checked all his bones and body parts to rule out any fracture or injury but nothing found then he asked some questions to his mother how the baby behave in routine. Since he was 1 week old whenever he cry he cry uncontrollably specially when he feel hunger or wana change diaper. Dr asked about his behavior and social response. Finally Dr. concluded some findings that are mentioned bellow:
1. High Irritability / seizures
2. No Eye to Eye contact
3. No Social Smile
4. Under Observation for Cerebral Palsy ?
He prescribed a medicine Phenobarbitone for 14 days, 3 times a day that actually controls his hyperactivity of brain or may be seizures. We revisit the clinic after 14 days of medicine administration and Dr. again evaluated the baby and was happy to see eye to eye contact started and social smile was also back in baby. We were very very happy to know but all of the sudden Dr. said there seems some muscle tone in the baby so we can not rule out CP and ask us to continue medicine for the next 4 months with some Calcium and Vitamin drops. This time Dr. also refer us to a physiotherapist and ask us to start physio therapy.
Next day we were in the clinic of another Dr. who was a specialist of child development and was also a child physiotherapist. 2nd Dr. again examine the baby and ask us about some questions and said there is no sign of CP as baby’s development is according to his age so nothing to worry at this time so give baby some more time and revisit at his age of 6 months.
We are really confused now but I myself started some very basic baby exercises at home and found a great progress in our baby just in 20 days. He is more active and responsive.
I am still concerned about his arms, Most of the time he keeps his arms in Boxing position with some grip. I observe he can also move his arms openly and in relax mood. He used to eat his hands nowdays. I am not a medical practitioner so cant evaluate level of his arms stiffness. It may be a normal level of stiffness or may be with some higher level. please suggest what to do ?
My nine months old baby has not gained full neck control as a result, he sits with support. He sometimes also has tight muscles. He was also diagnosed of larygomalacia and the pediatrician said he will out grow it. We are seeing a physiotherapist already. I need your prayers and also exercises to strenthen his neck. I key into your testimony for my son too.
Hi! Are you in our Hypertonicity Facebook group? This is the perfect place to ask this question. Here is the link: https://www.facebook.com/groups/hypertonicity/
Hi,
Our baby has high tone. Did you experience issues with fine motor skills like grabbing and batting? What helped? How was he when he started walking?
We put our son into therapy and it made such a difference. His walking was stiff, but with continued therapy and help, he was able to use his high tone to his advantage.