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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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I always come back to this post for suggestions! Your son’s story is so inspirational. When did your guy start crawling? I’m finding the arms are my son’s only setback right now. Do you have any suggestions to assist him to organize the movements. Thank you!
He was late to crawl, but I can’t remember exactly. My husband thinks after 9 months, but I think it was before that (sorry- we are on vacation so I can’t check baby books, but I know that it was later than his brother or sister). Even when he did crawl, it was SUCH an awkward-looking crawl. We really had to help him to learn how to bend at the hip, etc…
I suggest trying the Anat Baniel Method. It’s based on Feldenkrais Method, and is extremely effective with hypertonicity. It helps the child learn new set points for their muscles, and is gentle and fun for the child. Check out http://www.anatbanielmethod.com for practitioners near you.
Hello. My 8month old son was diagnosed with mixed muscle tone at 5months…. loose muscle tone on neck & trunk and tight muscle tone on his hands… he can grab things if we bring it close to his hands but he still can’t grab toys like other normal babies…. he still can’t sit independently & his neck control isn’t 100% yet… bt my husband and i aren’t giving up hope… we do PT regularly and it has helped a lot… his hands relax most of the time & he brings everything to his mouth these days.. it’s sooo cute… we’re hoping he’ll recover soon & that people won’t look at him as an Abnormal child.. that he’ll prove them Wrong
🙂 He will!
Hey Thejano,
This is exactly the case of my son, what was his diagnosis? Is he a preemie? And how is he now?
thank you so much for posting about this. My son is a 25 weeker and has hypertonicity. Now at two years he’s still not walking but we’ve gotten him on the right path with multiple therapists and doctors to aid in his advancement. I’m trying to do my research for everything he needs so that we can help him as much as possible, and this article gives me a lot of hope!
Keep on Keepin’ on … seriously!! He will be great & you are getting him therapy, so you are on the right path!!
Hi there, my son is 9 weeks old,after birth doctors said he was hypertonic , he has been crying and rigid since birth, and docs have changed milk as they said he was allergic, he also suffers with his bowel, to me he.is like is is having spams and arches his back, he can only settle upright in my arms, however docs are telling me he is just suffering constipation and giving laxative when I feel this is not the problem, my baby is stiff and I know he is in pain, did you experience any of these symptoms with your child. I could really use the help now thanks , I feel like no one is listening to me.
That’s how our son is. I would go to a neurologist. We had to go past our pediatrician, too, because they didn’t think that it was anything. It was really great to get to talk to someone that knew more about it. I’d give it a shot. Good luck.
I agree that you should get to a neurologist. You MUST be demanding with your doctors. If you feel like something is not normal, it probably isn’t. In addition to our daughter having hypertonia, I work in rare pediatric epilepsy. The one sad consistency is the tendency of pediatricians to not pick up on these issues or to underestimate them. You have to be your child’s advocate. You may even have to go to a few different neurologists.
Hey I am so happy to see your son doing so much progress
I have maybe the same problem with my little one, he was born @32 weeks
He has high muscle tone and this effected his breathing to he is still in the hospital due to this, if you can give me some ideas about stretches you used to do it with your little one and what kind of play therapy it will be much appreciated as you said the doctors told us the same things
Not walking not getting off the vent
But I am not gonna loose my hope
?
My name is Suha
Hey Suha! I would definitely get him therapy. It was life-changing! Doing joint compressions was great for us, too!
I came acros your inspiring story while searching on internet info for my daughter which was born with asphyxia.
You can imagine how terrible is to have 9 months a healthy baby and in the last minutes everything goes so bad that the chances for my baby to survive was zero.
Thanks God she is here in my arms 5 months old.
Long story short i wanted to ask you what advice can you give me because she is so rigid in her limbs especially in her arms.
She has been on physiotherapy since 2 months old but her rigidity isnt fading.
Please help me with any advice.
Greeting from Albania
Hello Emi. Your story is identical to mine of my now 5 month old son. I am just wondering how things turned out for your baby and what helped you?
Becky your story is so inspiring and your son has given so many of us hope for our children with hypertonia. I have been rereading this article since the birth of our baby and it kept me sane especially in the early days of nicu. One day i hope i am brave enough God willing to write down my own boy’s story to help others.
Hey I hope your son is doing better now
I have the same problem my lo was born stiff and they told he has high muscle tone in all his body
Can you pls explain to me how was your son when he was a baby
Maybe I can relate somehow
My email msouha@hotmail.com
He was just very stiff. He would also startle very easily.
thank you for getting back to me sorry for posting twice but my phone didnt show my comment
🙂 that’s ok!
Hi Becky,
My little guy has high tone. He is 13 months corrected and we are trying to get him to crawl but it is slow going. He is able to get up on hands and knees now but whenever he wants to get to something he does what we call “the super man lunge” and lunges forward. He has been walking with support since he was about 3 months corrected at which point our physio told us to not encourage that so we really tried to avoid letting him do that until a couple of months ago when she started talking about putting him in a walker at which point I figured she was ok with him walking. He will basically run if he gets excited and we hold him under his arms, but as I said the crawling just seems really hard for him to coordinate (one of his arms is weaker than the other and I think that may cause him some difficulty). I was just wondering if your son was the same in wanting to “walk” at an early age? Did he also walk on his tip toes and if so did the PTs etc. want to put braces on his feet to help the ankles stay down?
That sounds JUST like our Beau.
He did PT, but we never did braces, but I wish we had. He still will watch on his toes occasionally, but I just remind him to put his heels down.
Thanks for the feedback Becky!
Oh my goodness, I’m practically in tears finding this. This is exactly what we’re going through with my daughter, and I have been so distraught trying to accept this “wait and see” approach. She’s 11 wks and has mixed tone. We’ve had her in PT for a couple of weeks and peds referred us to neuro and EI. I also have an eval with an ABM practicioner this week. Reading Michelle’s post was like reading about my daughter… Everyone comments how strong she is and tries to make her “walk”, but the PT told us not to encourage this. People also comment about the fact that she’s been able to hold her head up on her own since one month old. She can roll one direction with assistance, but her body is weaker on the left side and she just can’t seem to coordinate when encouraged to roll the other direction. She also has mild Torticollis and clenches her fists, usually with her thumbs inside. Aside from the sensory issues, did your son experience any other issues or delays of cognition? My family and friends think I’m losing it and being over the top- that everything will just work itself out with time. But I can’t help but be proactive and do every single thing possible for my baby. Your story gives me so much hope and validates that what I’m doing is the right thing for my child! Thank you! Xo
You should join our Facebook group board. There are 12 moms/dads in there now & we are all talking about it. I think it will really help!!!!
Hello i want to join your facebook group .. my baby is 29 weeker and have almost same issues .. what is your group name .. tnx
WELL i HAVE A SON WHO IS 2 YEARS OLD AND HE IS HIGH MUSCLE TONE. WHEN HIS MUSCLE IS VERY TIGHT AND THE DOCTOR WAS SAYING THAT HE IS CP WHICH AFFECT THE 4 LIMBS AND I DO NOT WANT TO BELIEVE THAT BECAUSE MY SON IS VERY YOUNG STILL AND i JUST HAVE TO WORK WITH HIM TO GET HIS BACK STRONG SO THAT HE CAN SIT UP. I AM JUST GOING TO KEEP WORKING WITH HIM AND TRY TO SIT HIM UP MORE OFTEN… ANY SUGGESTION ON WHAT THERAPY BALL TO USE ON HIM>
Reading this post just gives me more hope with my daughter. I have read it before but found it again and it makes me feel much better. My 6 month old daughter is hypertonic since she was born but we didn’t know or at least didn’t know it was that until she was 2 months old and she started having seizures. Her neurologist doesn’t know why she is getting them as MRI, bloodwork, genetics, and all other tests have come out normal. When she was hospitalized after her first seizure they suggested for her to get early intervention because of her muscle stiffness. She has been getting PT 2x/week and also special instruction 2x/month. So far she has made progress with her focusing, smiling and tracking. She had regressed on all these skills after she started having seizures. My husband and I get a little desperate because we have seen only little progress on her physical part but we know that we have to be patient and that it is on God’s time not ours. So far we are only doing stretches but will start implementing the joint compressions and more massaging. We pray daily and have a lot of people praying for her.
By the way I requested to join your FB group.
Awesome. I’m so glad that you are joining the group. I think it is going to be very helpful. I will be praying for her. I love that she is smiling!!
Our daughter was born with hypertonia. She is currently 18mos. In addition to PT and OT, we are now adding speech therapy. Though she is talking some, we are choosing not to “wait and see,” taking advantage of all our early intervention strategies within our state. One success I will share is that we were able to get our whole exome sequencing covered by insurance once through a long, painful, repeated appeal process. Basically, keep appealing until it goes to external review. I have some presentations from UCLA genetics department I will post to facebook group, so that it might help you make your case. We also have had success with our neuromuscular physician by bringing up financial issues up front. She was able to work with a company, GeneDx, to agree to pay for anything insurance won’t cover in some gene tests.
I am not a religious person, but I believe in the power of love and positive attitude!!
Hi I read your post and my 10month old preemie has these same symptoms. I’m so worried about him. I talked with his home health nurse and his early steps provider and they feel that he’s fine. They say this is normal for preemies but I’m still worried about him. He’s 10 months (8months adjusted) and still not sitting independently. He’s not trying to crawl, doesn’t hold his bottle on his own. He only rolls from his belly to his back and he is just so stiff. He dosent stretch out his arms much and I try to get him to do it but he’s so tight im scared I’m going to hurt him if try to force him. He keeps his fist really tight most of time. I’m afraid its cp but praying its not. Could you please just say a prayer for my little one.
Hi! I just read your article on the activities that you do for your son! I’d like to first point that you’re a great mother and inspire to be that way with my son! He’s almost 14 months and was said to have a stroke and he is do amazing from what the doctors predicted for him! He has some similarity in the issues your son has. He does fist up and has arms up, but it’s gotten better. One thing that has helped was music and mimicking he is very motivated in doing new “dances” as we call them. All your excercise are something that we do for him and seeing how often and how long you’ve done it for is so amazing such motivation that it will help our kids! Thank you for taking the time out and writing this article; I was one of the people you’ve helped! I pray your continue your son continues to get “stronger” in a sense of getting less stiff and over comes this! Your family is amazing!
Thanks! you should join our FB page. There are so many parents with children with hypertonicity on there.
Hello,
I enjoyed reading and your son and I am so glad at how well he is doing. My daughter I’d 8 months adjusted. My twin girls were born at 28 weeks. Rylee has fought through some challenges along the way. She has feeding issues so we took her to a GI specialist. He used the word hypertonic. That’s the first time I ever heard that word. She is very stiff, very difficult to hold. We have to hold her shoulder too when we set her up on our lap. She also cries most of the time even when you hold her. She also sleeps with her head arched back. I have been stretching her on my own and we are in the process of getting her officially evaluated for physical therapy. She also has a MRI scheduled on Jan 5th. We are praying for complete healing in her body. If you have any ideas of how I can get as much PT as possible that would be great. They have medicaid and I’m told they will probably only cover 2 sessions a month. Thank you for sharing your story.
I went through our state’s early intervention program. I would look into that if you haven’t already… and a neurologist.
Yes we are going through a program called babies can’t wait.
Correction! Rylee is 5 months adjusted, 8 months gestation
I love your blog. My son is two months and was diagnosed as hypertonic. Reading your blog gave me hope.
Oh I’m so glad!
Dear Becky,
thank you so much for this blog. My daughter is 2,5 months old and two days ago she was diagnosed hypertonic. Till that day I thought I had a perfectly normal labour, healthy child, everything was ok.
Your blog gave me hope and instructions how to act till I get that appointment at state and private therapist, which is in 10 days.
Instead of crying to my friends now I’m already writing a schedule of exercises.
Oh that’s awesome. Way to go. Good luck! Keep me posted.
Dear Becky,
the two specialists said that she is slightly tight on the right side, showed us the exercises and said that it is enough to exercise regularry at home. Now Eva is 4,5 months old and she is already turning from lying on the back to the stomach, I can see some tension in her right arm, but I think phisically she is o.k.. What I’m concerned now is her sensitivity, she is often afraid of people, in situations where there are a lot of people around her she starts to cry panically, even without a reason. In such cases it is impossible to comfort her, it only helps to go to a quiet place or to go home. Otherwise she doesn’t cry much, sleeps all night, never had colics… Please tell me if that was similar with your son and if now at the age of five he is higly sensitive or not? If yes, how does he handle that?
Are you in our FB group? There are around 120 parents- you should post this in there b/c they are so helpful (that way you get a lot of feedback & not just mine) 🙂
Hi thank you so much for sharing your story. It’s a joy to see your handsome smiling 5 year old son. My son is 7 months old and has severe reflux abd vomitting. He was on a feeding tube for a month at the hospital and now we are giving small frequent oral feeds at home. He also has hypertonicity, delayed milestones and scissoring of his legs. They tested him for various neurological and metabolic conditions and everything has come out negative. He is improving in small ways everyday as he is gaining more weight. They want to further testing on him but we are getting to a point where we don’t want him to go through so many more tears. We know medicine doesn’t have all the answers and only God does. Thank you again for sharing your story. I would love to join your fb group
Tina