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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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Hello,
My little girl was born prematurely just a spontaneous delivery no infections or issues ect at 29 weeks +6, she weighed 3pounds 5oz she was on a NICU ward for 8 weeks just needed a little bit of help with breathing for a few weeks other than that everything was fine.
when we got her home she had routine scans on her brain which she also had in hospital they said the only thing at that stage they noticed was a bit of brightening on the left hand side of her brain. they decided to take her for an MRI scan to get a better idea and noticed she had some tiny tiny cysts on her left side of the brain, they told us they did not think they had any effect on my daughter but would keep an eye on her development.
She then attended baby massage classes straight from being discharged from the hospital after that she started with OT and PT every 4 weeks (she still attends these now) at first they noticed her fists where clenched a lot of the time they gave us exercises to discourage this and they soon stopped and now this very rarely happens at all she can quite happily play reach and pass toys ect no problems there.
she was late at rolling and sitting up on her own and only just now at 14 months old has she mastered this (she is still sometimes uneasy/ unbalanced when sitting).
She can get up on to her hands and knees with help in a crawling position and attempts to crawl by moving her hands but she falls on to her front as her legs don’t follow, she loves to be stood up (with help) she always has done since been a few months old.
The OT & PT have noticed since starting to see them she is stiff in her legs and have suggested she may have high tone?.
Other than the stiff legs and the clenched fists in the past we have a very intelligent 14 month old little girl that is very aware of everything that is going on talking is very forward for her age shes feeding well and even like to feed her self there is no cause of concern in any other aspects of her life.
We are due to meet with the neonatal team, specialists, OT & PT this Thursday morning to see what the next steps are, but this is all new to me and wondered if anyone could give me any insight in to this high tone…
What kind of treatment options they are? What to do?
We are feeling very alone with this at the minute as we have no answers and are so worried that our little girl will never walk?!
Many thanks.
Are you in my Hypertonic children FB group? Find the link at the bottom of the post. You will find a TON of support in there. It is scary, but we are all here to help. 🙂
My baby girl is almost eight months. We started therapy at three months for torticollis. Her therapist had to help her with her milestones along the way. I started noticing she move differently than her brothers did at her age. When she started sitting she always kept one leg close to her body. Changing her diaper became difficult and she has been keeping her legs in the scissor position. Ortho has cleared her. Now we meet with neuro next month. She still hasn’t started to crawl. Her therapist thinks she may army crawl or not crawl at all. This is all new for us and there doesn’t seem to be much info out there. She is very motivated and loves to move. Just wanting answers!
Good luck! IT is so hard to not know what is going on.
hi becky
i love your blog and thank you for sharing.
we have baby girl who is 8 months now. her name is Emily.
Emily had bleed in her right brain when she was in my tummy at week 19 of pregnancy.
doctors picked it up through ultrasound. I could not believe the words came out from the doctors mouth when they explained to me that my baby had brain stroke. i did MRI in week 25 of pregnancy. The bleed stopped so we continued the pregnancy. Emily did MRI on her own when she was 3 months old. She is happy and smily bub so far.
As they expected the bleed on right brain damaged the part of brain which control movement of left side of her body. she keeps her left hand fisted most of the time and her left leg is stiff.
they categorised any brain injury as cerebral palsy.
we have been doing Physiotherapies and occupational therapies every week.
she hasnt sit independently yet and has not crawled yet.
i am terrified. no doctors can guarante her ability to walk. they said we have to wait and see.
i understand your son had hypertonic and is doing well at the moment.
did he has to take medication ‘baclofen’ ? emily is starting it.
i tried to click the facebook page but came out with error. do i just search for hypertonic children in facebook page?
thanks
Yuli
He never took medicine, but we did do a lot of therapy.
Yes, just search hypertonic children or hypertonicity
Indians have always massage their babies each morning and evening after clean up time
Getting a healthy benefit anointing oils in the right combination from Jerusalem Gift in the holy land is very important (Frankincense, Myrrh, Spikenard). Baby oil is not that healthy on the child’s skin
Also to keep your baby immunity strong and stop any yeast or bacteria in the gut use few drops (3-6) of blackseed oil in your baby drinking water, milk or juice (depending on the age of the child). Blackseed is the greatest oil on earth and has no side effects. It has HGH and is natural antibiotic. After the child has passed 18 to 24 months you could use honey in their water. It the greatest good sugar that helps with plaque, gingivitis and flora in the gut stopping acid reflux and gerd
Blackseed is for all malady and allergies today with honey and camel milk. Can be used with ginger/garlic but not if you have low pressure because of the ginger and garlic components
Hi Becky,
I first read this blog post 18 months ago when our son was born and due to some birth complications was diagnosed with hypertonia. We weren’t and still aren’t sure if a diagnoses of CP is around the corner. If our son does have it, it’s very mild.
I wanted to ask you though, what it was like for your son to learn how to walk. Did he make a smooth transition? Did you have to do any gait training at all? If so, Has he developed a normal gait now?
I’m curious because our son is walking but you can definitely tell he has tightness in his muscles and he’s way more clumsy than other kids his age.
Just wanted to pick your brain on that and thank you for this blog post. I’ve re-read throughout the months as a form of inspiration!
He was slow to walk, but it happened around 16 months, I think.
Your article brought me to tears because finally someone really understands (& wrote about) what my daughter has been suffering with for her 21 years! Thank you! And I hope to be in touch. My daughter was dx’d with Hypertonia at 7 & now she is a dance instuctor (see her chsnnel): http://www.youtube.com/KaylianaReeves
Hi I’m a first time mom of a 7 week old baby . I had a normal pregnancy untill the day I had him , he was deprived of oxygen and was diagnosed with (HIE) he was in the nicu for about 5 weeks We had his first app to his pediatrician, that’s where she mentioned he was at high risk for cerebral palsy. But there are a few things I notice with my baby he doesn’t have strong muscle tone with his neck and has a bit of stiffness on his right arm but over all he is able to move it and stretch it out especially when he wakes up or is mad . He’s able to move . I do see some floppiness , I honestly don’t know if it is because he was in the Nicu and was incubated pretty much paralyzed . His MRI came back normal but i don’t know if it was too early to tell if there had been any brain damage at this point . I hope and pray to god I have answers soon you gave me hope . I pray that CP is ruled out and if there is anything else wrong we can get therapy for him and have as much of a normal active life for him as possible . Thank you for your post
I’ll be praying for your sweet baby, too.
Hi Becky I just wanted to thank you for this post. It is giving me hope in quite a dark time for us.
My baby’s posture looked just like your boy when he was born. He has loosened a small bit so far in his 15 weeks of life. He has very stiff arms and tight hands and his legs are somewhat variable to how he’s feeling.
For some reason he can’t eat well so he is tube fed.
He smiled for the first time this week and it helped give me strength. He doesn’t have cerebral palsy either his MRI was fine. I hope his future looks as bright as your boy!! Once again thank you for th hope x
Our son never ate well, either.
Hi Becky,
I was so inspired by your testimony about your son and believing God to heal my son completely.
My son is 7months old now. He had brain injury as result of uterine rupture, we started therapy almost 3weeks after his birth, he has not gain appreciable weight(weight at birth3.3Kg present weight 4.3Kg). My son does not smile or cry, at times he vomits all the food taken. Kindly advice as I join my faith with yours for his completion health restoration
Babies can be depleted in the cell salts that calm the brain and relax the muscles. Kali Phos, Ferrum Phos, Calc Phos, Nat Phos and Mag Phos. See the work of Dr Schuessler. Cell Salts are generally taken in the 6X form. This is not intended to diagnose or treat any codition or disease; providing general information for research. Third generation Nurse 25 + years experience.
One of my twins has high muscle tone. They were born premature at 28 weeks. Like your son, the hunched shoulders really gave it away and I could tell it was affecting his reaching and learning to roll. At 4 months we started working with an Osteopath who specializes in infants and in less than 2 months – no hunched shoulders, after one session he could finally bring his feet up and can now get them to his mouth. He reaches out for toys and rolls. He now likes tummy time can finally bring his whole chest off the ground and is starting to try to crawl. I have been so amazed at the progess. Early treatment and stretching is so important! So glad to hear your son is doing well.
Thank you so much for writing.
Hi Becky. Thanks for sharing. So, my girl really delayed in meeting her milestones. She crawled at 1 year when i was even tired of waiting. She is now 1 months and she just started taking her few steps. however after reading your story i now think she has this hypertonia thing. Her left leg is so stiff that when she is walking, it doesnt bend. she drags it along. She also seems to have club foot too so its just so many things wwrong with her. She had a convulsion once and i am here thinking maybe it affected her brain. I am going to do an MRI for her next week. But im glad to read from you!
Your story And perseverance is outstanding. We are our kids biggest advocate. I am a fairly new mom. My child has some delays…speech and motor – just getting into OT and speech… My husband is very concerned about why…
At the end of the day, the “Why”is important, I guess… But it’s the “what are we going to do about it now”
That I need to focus on( my opinion:))- so thank you for your story- your suggestions and everything in between
Hi, this is Chandrashekhar, my baby has developed the hypertone in her neck muscles, she is 11months now and she is bending her head down, she is not able to sustain her head . We are regularly doing physio for her with a personal physiotherapists. Let me know what else i have to add to her daily routine so that she will get the proper neck control.
Bcoz of poor neck control she is having problem in siiting also.
Hi! This is old article but it helped me so much. We have 7 months old baby boy who has had high muscle tone since birth, and some other sympthoms which has disappeared but stiffness is still there in arms and neck. Brains are ok, no signs of any injury. We were in hospital for 3,5weeks after his birth but no reason for sympthoms founded. My questions for other “stiff baby parents” is, did your baby start to grab or reach toys normally? Our son does not do that. Now at 7,5months age he can grab toys if I put something to his hand but he doesn’t do that by himself at all. We are worrying that there is something wrong. We have therapy once a week.