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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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My 7 month old is having a ton of testing done because she has high muscle tone in her hips and legs. They originally thought she had Hip Displaysia, but after an x-ray they ruled that out. She has to go in for an MRI to make sure that she doesnt have Cerebral Palsy. They aren’t exactly sure whats wrong with her. All we know is that around 5 months old they discovered she had an extra leg fold (a really deep one at that). She WAS rolling over at the age of 3 months (from tummy to back), then stopped abruptly. She always is so stiff, like you said, in her legs and hips. She jsut started sitting on her own in the last couple weeks, and we have to “bend” her to get her into a sitting position (like in a highchair), or on the floor. She doesn’t like to weightbear on her left leg (the one that has the extra fold). Anyway, there are a few other things as well. Reading your article actually really helped me feel at ease. They said that if it is just high muscle tone it can be helped, but I was really scared. “what-ifs” crowded my mind. But knowing and seeing that it CAN be ok, I feel better. Thanks for this post. (Ps. we have been doing physical therapy since they determined it WASN’T hip displaysia.)
I just got chills reading your post b/c it took me back to when they told us that it could be cerebral palsy, too, or a stroke, etc… It is scary, the unknowns, but you sound like you are on top of things. My Mom told me once that God picked us as parents because we were proactive in his care and you are, too, for your daughter.
Praying for her & for you to know what to do next. Good luck with her testing. That was very emotionally tough for my husband and I, but years later, he is doing wonderfully and I see your daughter the same way.
Hugs- Becky
PS- comment or email me anytime, even just for a little support from someone who has been there. I’ll get back to you ASAP.
Becky,
Of course here it is 3am and I’m doing more internet searches (that I told myself I wouldn’t) regarding hypertonia. Our 4 month old has had this essentially since birth. Started with fine tremors that were more severe than the usual newborn tremors. A hospital stay ruled out any kind of seizure activity. We recently completed a sedated MRI which revealed “mild volume loss and benign enlargement of subarachnoid spaces of infancy(BESSI). From what we’ve learned from neuro the BESSI is unrelated to his muscle tone and is something he will outgrow-no treatment needed, seems odd though to me. Obviously CP is at the top of my concern. We follow up with Neuro next week. I’m always trying to keep a list of questions I want to ask or concerns to address-mainly, where do we go from here? I was almost in tears reading this page because it all sounds so familiar. I just want to absorbed every bit of knowledge you have on this, especially coming from a real life mom who has been in the trenches!
I just stumbled across this post, and your blog googling, “hypertonicIty in babies.” My daughter was diagnosed with high muscle tone at two months old. She’s seven months old now and still can’t do a lot of things most babies can- she still can’t roll over or play with her feet. We have to physically help her bend her legs and hips to get her to sit (like someone mentioned above). I know all babies develop at their own pace, it’s just nice to know she’s not the only one, and we aren’t the only parents left scratching their heads about how to help. She’s in PT several times a month which is helping. Thanks for you post! Glad your little man is thriving.
Becky also has a Facebook Group you can join for community support. 🙂 Just search for: Hypertonic Children (high muscle tone, hypertoncity)
Your son inspires me to fight and dream big for my son. My Adam is 6 weeks old and due to a horrific birth suffered brain damage. At 3 weeks he was diagnosed hypertonic. We hoping its not CP but that the future will tell!
Get therapy early & pray, pray, pray. Work with him, even when it seems hard. 🙂 Good luck & email me anytime (yourmodernfamily@gmail.com)
Hi 🙂 My son have also stiff baby syndrome. He is 12 years old now. We live in Finland. Hannele Al-Hamzawi
Great to meet you 🙂
I read this almost a year and it pops up again. Thank you for the inspiration. I wanted to know if your neurologist provided any additional insight and if you could recommend any websites for massage?
Our son we noticed was showing stiffness / hypertonicity at 10 months on his left arm; went to neurology and Dr. diagnosed his symptoms as spastic left side hemiplegia CP (all w/o an MRI or any other exam), explaining he did it so we wouldn’t get push back from insurances (hoping that’s exactly the case especially since we’ve had our check up our son continues to show improvement). Our son has been in PT/OT since then and continued to meet milestones: army crawl, 4-point crawl, and has been independently walking since 17months; still some tightness on the left arm but does have great range of motion and involves / uses it more and more. We’re at 20months now and we have an MRI scheduled after 2yrs old; praying and hoping it’s not CP and hoping through God’s Mercy, Love, and Grace our son will be healed as he continues to grow stronger and stronger each and every day.
My son suffered similarly and also is hypertonic. How is Adam now?
Hi there Jolene
My child Christine had a seizure after i had c section .
It not easy i know but is CP that child have part are brain damage due a lot of reasons but nothing is impossible by God
REMEMBER I AM STILL WISH THINGS COULD BE DIFFERENT BUT IT NOT.My Christine is 14 months she clever adorable but cant walk yet but there hope, she progressing alot.The earlier they diagnosed the better there chances is . JOLENE HAVE FAITH I PRAY FOR ALL OF YOU GOD GIVE GUIDANCE AND LOVE AND GIVE YOU STRENGTH.
Plz, how was here development? I mean motor? When did she use her hands? Rolled? Sit?
Hello, i love your blog, my baby is 9 months old and is hypertonic
He began the therapy when he had 2 weeks old
Oh- you’re kidding. It is a long road, but our son is doing so great now. He is 5. I am thinking of taking him to a chiropractor, too. I have heard so many great things about them & put it off for a long time, but I think it might help with his clumsiness. 🙂 (I bet you’ll notice that down the road, too).
How are things going for you?
Re chiropactor. First of all, a good one will do an xray first. Secondly, be sure he,s not just pulling the money out of you. I,ve been going to one for over two years till realized we don,t really get anywhere. Went nhs and the the children are getting better when we do exercises they give. The difference is, on top of that chiripactor wants you to feel better, they need to earn money. The nhs doctors just want to really you get better. So careful with chiropractors
What is nhs?
Why X-ray? That doesn’t seem necessary.
The NHS is the national health service, in the U.K.
Chiropractors do not have it within their practice rights to order or review xrays, they are also not the profession to treat children with spasticity/hypertonicity. For this, you would visit first a neurologist and then a physical therapist or occupational therapist. They will assist with strengthening, positioning, functional mobility, and making sure that your child gets back on the right track developmentally.
I came across this article by accident this morning and it had to be a God send. My daughter turned 2 in April and she is hypertonic. It was so severe as a young baby but we didn’t realize it because her pediatrician just kept saying “oh she will catch up… She’s just a little behind” when she wasn’t rolling over or sitting up well by 1 year old. Finally we got a second opinion and had an mri done on her brain to see if she had had a stroke or other kind of damage. None was found. To make a long story short, we started therapy with AEA home visits but she wasn’t making enough progress so we started at our hospitals rehabilitation unit with a physical therapist 3 days a week and the progress she has made in the last year is amazing. She is not walking yet but started crawling 2 months before she turned 2. Her upper body when she stands up is still so stiff, she locks herself because that’s what she is comfortable with and knows, so we are working on that right now. I wish more than anything we had known what was going on and were able to get therapy as a baby but we didn’t. Her muscles were just so tight and she was so stiff as a baby that her therapist told me they had to reroute her brain basically. Re-teach her brain what to do correctly. It’s a long process but so exciting to see her do new things all of the time 🙂
Hey Allyssa- Oh I have been where you are! Feel free to message me on Facebook (Facebook.com/Yourmodernfamily) & I can help you as much as I can. You can ask all of the questions that you have b/c it is a so uncommon that I felt like I had no where to turn.
Hello I was wondering if I could please talk to you about my 4mth old son that I am deeply concerned about . I feel something is not right an the thought of it makes me sick to my stomach as I blame myself . I would like to have a private chat with you about my concerns please if you would be kind enough to give me any advise . Kind regards Renata
rmolnar76@icloud.com
Are you in our facebook group?
Alyssa, how is your daughter doing now?? My daughter was delayed in rolling over. She started doing that around 7 months corrected, but continues to have stiff legs and stands on her tip toes. She has seen two pediatric neurologists. One said he thought she was fine and would “grow out of it” and another said she believed she had a very mild form of cerebral palsy affecting her legs only (spastic diplegia). She is only 15 months so only time will tell which neurologist is correct, but it has been an emotional road for me. We are waiting to do an MRI until after she is two. Was your daughter diagnosed with CP? Thanks for any info you can share with me!
My baby boy(32 weeker) now 7months actual ,5 months+2weeks corrected, has PVL from birth the neuro found that he has mild hypertonia last November, we started PT at a center which we quit and we are on waiting list for another, I’m doing my best at home.
Plz wanna ask how was ur girl? Her posture? How she sleeps? Her legs and feet posture? Her arms when she started to use her hands? Reach and sit?
Did you ever find out what caused it? My daughter is 2 weeks old and is hypertonic. We’ve been seen by neurologists, geneticists, metabolic doctors, did two MRIs, two EEG’s, countless blood, urine and spinal fluid tests with no answer…
No- over 17 Dr. visits (Chapel Hill, Duke…) and many, many tests and no answers, but with a lot of therapy and prayers, he is now 6 and he is AMAZINGLY PERFECT!
Our baby was completely healthy until delivery. 22 hours labor and the baby was a lot bigger than they realized. When she came out the cord was wrapped tightly around her neck. We do not know how long. They had to perform life saving procedures and she is very healthy now at 3 months. Today they said she has high muscle tone and recommending massages. She kicks quite frequently and we have seen “quivers” in her legs. Not sure what caused the high muscle tone but could have been from oxygen deprivation. I believe a c-section should have been performed sooner.
I read this article over and over again when I’m feeling down and frustrated with slow progress. My son is 8 months old and had mixed muscle tone (high in arms and legs/low in neck and trunk). We started therapy at home and through EI last month and have seen progress. Thank you for this. It gives so much hope for my son’s future. Your son’s story is inspirational.
Oh, I’m so glad to hear it! Yep- our son is 6 now & AMAZING! So just keep on keepin’ on… its worth it. 🙂
Danielle how is yo son now
Hi Danielle and Becky,
our son is 5.5 month old and we recently found out he has hypertonic in his limbs and hypotonicity in his trunk and neck. I have not done any test yet and trying to get 2nd, 3rd and 4th opinion. do you have any suggestion for a good neurologist special on these matters?
thanks
My neurologist has retired, but any would be helpful, I’m sure. 🙂 Just start therapy as soon as possible- every day counts.
My son is 2 months old. He was a floppy baby St birth but now is hypertonic with his arms and legs and still hypotonic in his trunk and neck. Did you ever get an answer for this? We just started early intervention and are in the middle of terrifying genetic testing. Thanks
Erin
No, just that he was hypertonic. Sorry.
Thank you so much for this info. I came across this 10 weeks ago when my daughter was first diagnosed with high muscle tone in all limbs. You helped me get the right help we needed while we waited for our health system to catch up. Yes we have paid privately but the results are great. She couldn’t move her arms and now can pick up toys. How did they rule out cp?
I’m so glad. They never really ruled out CP, they just said that we would know as he started doing things, like rolling, crawling and walking. Once he was able to coordinate his muscles and we could see how he did these things, we knew that he didn’t have it.
Hi, me again. Since posting the above we have got a diagnosis – polymicrogyria. A fairly rare condition where parts of.the brain didn’t develop properly (hard to see on mri’s). We are however seeing really positive progress. Thanks again as this article really has helped. Jo
I’m so glad that you wrote. I haven’t heard of that, but I’ll look it up. Praying for you, in the meantime (and I’m glad that you got some answers- that is the WORST part… not knowing)
Hi Jo and Becky, we just found out our son has polymicrogyria and hypertonicity. He’s 3 months old. We are waiting to get an apt with a neurologist and a physical therapist. How old is your son Jo and how long has he had it? My little one wants to arch his back and lean his head backwards all the time. They have mentioned possibilities such as CP, they also said that it could turn out to be very minor, but there was also a possibility that it could affect him so bad that he may have to use a wheelchair when he’s older.
He was a few months when we found out, but nine now and doing AMAZING. Praying for you! Start therapy ASAP and work with him every single day. It makes a huge difference.
My daughter too has Polymicrogyria. She also has Infantile Spasms. She is almost 15 months old and still can’t sit unassisted. She has made progress and hopefully will be sitting soon. She too doesn’t pick toys up or hold anything for that matter. She thrushes her trunk and hips forward and doesn’t like sitting at 90 degrees. Her OT says that her back muscles are stronger than her stomach muscles. I am so afraid she isn’t going to sit and or walk and just need positive stories. Oh and she is on an AED which is known to keep babies from progressing as well. Although we have seen progress in the past few months, I pray once she is weaned off the AED, she will start taking off in development.
This article just relates directly to my son. He will be a year old on the 22nd of this month and he was diagnosed with hypertonia at 2 1/2 months old. We have been doing therapy ever since. He does have sensory issues as well and we are working at that every day. He is still unable to wear socks and shoes and has a very severe vestibular issue. I just found out about play therapy which is offered here in our state, and I am waiting for one of the therapists to contact me so we can get that started. My son is having very severe aggresssion issues wherein he is pounding his head into everything and pulling his hair due to frustration and boredom. Have you experienced any of these issues in the past? Also, do you have any thoughts or ideas of things I can do with Robert in the meantime until we can control these harmful urges?
Beau has sensory issues, too. He is 6 and still has those issues (socks, shoes, clothes that are itchy at all.. he LIVES in those dry-fit shirts!)
Our son is more aggressive than other kids, for sure, but he has learned to manage it well. He will jump on me a lot, is VERY touchy-feely (always wanting his back scratched, always hanging on us, etc…) He has gotten in trouble when he was in preschool for getting excited to go outside & pushing a friend, etc… We (his dad & I) know that it is just the excitement that gets the best of him and he is so so strong that it is easy for him to actually hurt someone (his muscles are like that of a 15 year old – his strength from being so tight).
All in all- he is so very normal & no one would know these things if we didn’t tell him. 🙂 Just keep seeing an OT/PT because it really helped. They had great suggestions (joint compressions, not using gentle touch with him, etc…)
Good luck!
Hello there,
I am a Graduate Student at Rochester Institute of Technology getting my Master’s degree in Industrial Design and I just found your blog. I’m working on my graduate thesis right now and I’m trying to find a way that design can have a positive impact on children with low and high muscle tone. I really need some input from parents of children with abnormal muscle tone and have put together a quick survey for them to take. If you wouldn’t mind taking a look at it and possibly sending it a long to anyone you know who might be of help I would appreciate it more than you know. I would love to give you more information on my project if you’re interested! The link to the survey is: https://www.surveymonkey.com/s/T5B7NSV . Thank you!
Our son is 4 months old born 6 weeks prematurely, he has upper arm tightness. I just came back fro the Dr and she through out cerebral palsy. I am a basket case! He moves his arms and legs but when we pull his arms up, it’s a little tough. I’m scared…
It is scary and they gave us that diagnosis as a “maybe” but we stuck with therapy and waited for him to show us signs (rolling, crawling)… He was late doing these things, but did them. I will pray that you get the answers that you are looking for.
Hey Becky, when did your son start rolling crawling etc
He was later. Closer to 8-10 months, I think?
Hey Dana,
How is ur lil one now? Mine diagnosed at 5 months actual , 3 months corrected, I noticed nothing at first except some resistance when changing diapers , now we are on physio
Thank you for this post! My daughter is 4 months old and has been called “very strong” because of her tight little legs and her inability to hinge easily at the waist. People see it as a good thing, but I felt it wasn’t normal. She had rolled a couple of times around 2 months, but not consistently. We have our first PT appt on Monday. I’m praying it’s nothing serious, but I am encouraged knowing whatever is it that we can help her with therapy and that it can at least improve her quality of life.
I’m so glad that you are going to a PT. Come back & let me know what they say. Good luck!
Thank you so much for sharing your story. I too have an 8 month old son that has hypertonicity. I have been so worried about him. Reading this has helped. Wanted to ask you a few questions…how old was your son when he began rolling, crawling and sitting? Did your son keep his hands fisted? If so, how long did he keep them fisted? My son puts things in his mouth, but at times seems like he struggles. Did your son do that? Sorry so many questions.
He was later than normal, but I can’t remember (maybe 10 months?)
Yes- he hands were ALWAYS fisted! I used to open them so many times a day, constantly, anytime I held him.
Yes- he couldn’t get anything in his mouth. His feet didn’t reach his mouth for SO long. lol.
Ps- he doing awesome now! 🙂 Praying for you.
This is such a great resource. I’m a Child Development Specialist working with 0-3 year olds with a wide range of developmental and physiological issues. You explained thing so well. I wanted to thank you for including prayer. People don’t talk about it enough, but it is a common thread when you talk to people whose babies are thriving. My son has autism, and we have seen miraculous things happen as people have prayed for him. Your family is beautiful. Thank you so much for sharing your journey!
Thank you! Oh yes- prayer is huge!!
thank you for posting this! My son is almost 3 months old and has the symptoms of this. My pediatrician told me to start doing stretches & exercise we will see how he is progressing in a few weeks, he’s also had trouble gaining weight which I’m hoping was due to breastfeeding I stopped that and put him strictly on formula due to colic was so awful! But so far stretches seem to help a lot as my dr said he does have some mobility when she examined him which is good because I know a lot have none at all. Anyway I’m so thankful for this encouraging article and PRAYER! That is the most important to me right now!
wow- our stories are VERY similar.
Hello I have a 29.4 weeker grandson he is 17 months old 15 months adjusted he had 1/2 bilateral brain bleed he goes to PT and OT four times a week neurologist does not believe he has CP he is developmentally like a six-month-old he just started to army crawl he has tightness in the legs and is currently wearing the splint to keep his hand from going to the fist I was just curious what is the difference in hypertonia and CP ?
They actually thought that our son had CP, but once he started meeting his developmental milestones on time or just a little late, they found that he didn’t have it. I’m not sure the true difference, but hypertonia can be treated and our son has almost fully recovered, where CP will always show. I’m sorry- I wish that I had better answers for you.