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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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Thank you, I am a mother to the most spirited little 8 month old but it has really taken it’s toll as he is a very hard baby, and I’ve been struggling on a daily basis – I have never come across a baby that cries so much and is so stiff and so anxious……reading this has really helped me start somewhere. Thank you so much for sharing your story and I would love to read more about your story on Facebook .
Regards Juanita Cherrington
Hi. Thanx for your page on hypertonic babies. I just had my 9 month old baby evaluated by a physical therapist for gross motor delays and discovered that he is hypertonic. I completely missed all signs of it as I was unaware of it. Your article describes him well. I wish I would’ve been aware of it earlier as we would’ve been able to start therapy earlier. Whenever I raised any concern about his gross motor skills I got the ” look how strong he is there’s nothing wrong with him reply”. Even from the pediatrician. I’m glad I listened to my instincts. I believe a greater awareness about hypertonicity has to be raised.
I’m glad that you listened to your instincts, too. We really had to push for doctors to believe us about a lot of things with Beau.
I would like to learn more. I am the foster mom of a wonderful 10 month old baby boy with non accidental brain injury. We have just started with First Steps evaluations and have found a problem with high muscle tone.
You should join our Facebook group (listed in the bottom of that post). The people in there are WONDERFULLY helpful to one another.
I am the foster mom of a wonderful 10 month old baby boy who is showing signs of high muscle tone in certain limbs. He was a victim of non accidental brain injury and is 4 months status post brain surgery. My baby also vomits frequently. I think he might have several symptoms related to this condition. We are just starting the evaluation process with first steps.
Sounds just like our Beau.
my doughter lage is all rady not step right our englis is not purfect but i think u undurstood my problem give some more idea for my doughter thanks……
Hi Please can you let me know the Facebook page I need to go on?
https://www.facebook.com/groups/1651393335142673/
Hi I would like to join the facebook group
Hi
My baby had oxygen deprivation during her birth. She is also have hypertonia. Her MRI report shows moderate damage. She is 9 months old and still doesn’t have head control. She doesn’t grasp things. She arches her body often. We are getting her physiotherapy. Doctors saying she has symtoms of cerebral palsy. Is there any hope she would be able to do normal activity?
At 9 months, it is impossible to tell, but we thought that Beau’s chances at a normal life were slim & he has 100% turned around! 🙂 So there is always hope!
Hi…Becky…thank you so much for the information u shared. Untill 9 month we were unaware of hypertonicity..my pedestrian always said.mits normal..she will be ok. But she has not achieved any of milestone. After this we are getting physiotherapy from 1 month.she has improved but not so much . Next week ee r goingfor MRI. any siggestion u wanted to give bit we are quite depressed. Why this oroblem occurs ..we have no idea…
You should join our FB group if you aren’t in it already. So much helpful info!
I am inspired by your blog and wanted to write. My daughter has always had balance issues since she was born. Her birth was pretty normal. We needed a C-section because I wasn’t dilating but the Doc never said she was oxygen deprived. She doesn’t want to ride a bike or do anything that requires climbing. She will turn 5 in July and she is having issues at school falling a lot. Doctor hasn’t given us a diagnosis but he noted spastic walking with hypertonicity only when walking and hypotonicity when sitting. School is very worried with her falling. They want to wash their hands off and put a helmet on her. We did an MRI which doesn’t show much. We are doing more generic testing to see if anything can be diagnosed. Where can I find out more stretches to do? How many times should they be done? I just hope this is not progressive and doesn’t get worst.
You should join our Facebook group- it is really helpful & there are ton of parents in there that can help (over 130)
Hi I am finding myself right where you were 6 years or so ago! I’m worried about brain damage. Did you ever have him do an MRI?
We did. You should join our group on FB. It is so helpful.
hey there…my granddaughter was born July 28th ,2016 (4 weeks early). Shortly after there were concerns about her not being able to eat. After several test we were told that she had a “floppy airway” Laryngomalacia and high muscle tone. She had her first surgery to see if some of the excess skin could be removed to help her breathe. She also had stridor. The surgery didn’t help much and she was failing to thrive. For 4 months we were clueless and she was released from the hospital for 2 weeks to be readmitted. She had an MRI in October to see if there was any damage to her brain. The MRI came back normal. In November we were desperate. We finally were referred to a doctor who preformed another surgery that made such a big difference. In December the feeding tube was removed from her nose and she has been able to eat from her bottle. She finally began to gain weight and in a month has went from the 10 percentile in her age group to 50 percentile. She has not met the milestones of babies her age. I believe it is due to the fact that for 5 months she has been fighting to live! At 9 months she can roll over, reach for objects, grasp them, smile, coo and sit up with some assistance. She has been working with PT for her muscles. My daughter was referred to a Neurologist who wants to do genetics testing and and MRI. Please pray for our baby as well. Your article was very encouraging. The internet can be a blessing and a curse when you are looking for answers! I will look for your page on Facebook! God Bless!
Thanks you for all the info. My little guy was born with a brain injury (vintriculomegaly) that wasn’t discovered until 3 months. We are in therapy and go to the chiropractor, but haven’t tried any type of massage. He is 7 months old now and I still have so many questions. He had such a hard time sleeping unless he is tightly swaddled, but he is outgrowing all the swaddle bags- any recommendations of insights? He’s big toes are constantly drawn up, did you deal with this by chance? I would love to be added to your Facebook group for more info and support.
I would like to join your Facebook group. I think our adopted son has this condition. Thank you for all the information. Calling the dr for an appt. tomorrow!
Hi, my name is Julie and I just wanted to touch base with you on your Son’s motor development. I have a 17 month old son who was diagnosed with “cortical dysplasia”. It is a condition that affects his motor control and ability of his brain to tell his body what to do. A common symptom is high muscle tone, which he has in his limbs. He also has low tone in his trunk and neck. We have had him in therapy since November and he HAS made progress. I am just a little uncertain of what the future will hold for him, and my husband and me. Can you give me an idea of when your son hit certain milestones? (pushing up to sit, sitting independently, crawling, pulling up, walking)? I would love to even have an slight idea of when these things could be possible for him.
Your son’s story is VERY encouraging for us to read. We are doing everything that we can for him and praying a lot. I know that God has our best interests at heart and will take care of my son. Thank your for sharing your experience!
Thank you. Good luck. Our son was delayed by about 6 months, I’d say.
Good luck!
Ps- join our FB group (about hypertonicity & delays) if you can (the link is in the bottom of this post). It is so helpful!!
Hello,
I really appreciate the work you are doing here. My son was born four months ago in April. He had jaundice and was treated. Presently, he sucks very well and plays alot. Though he is active with his body parts but the neck is is flopy. It keeps going backward. I ve been refered to a Neorology by next week but I am earger to hear something before then.
PAUL
Hi there!
I have a quick question that I am hoping you can help me with. My nephew suffers from severe high muscle tone among a number of other things. He is between 18 and 19 months old. I am searching for a Christmas gift that might help with the issue. Is there anything that you may have used during therepy that helped with the muscle stiffness? I want to get him a great gift, but i t is hard searching when he has these physical boundaries! TIA!
-Kyli
I just bought him things that he could reach for (and WANTED to reach for). The reaching across his body & up high really helps.