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!
5 year old with hypertonicity
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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Christie Smathers says
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.)
Becky (Your Modern Family) says
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.
Stephanie D says
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!
Kelly says
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.
Amy Shepley says
Becky also has a Facebook Group you can join for community support. 🙂 Just search for: Hypertonic Children (high muscle tone, hypertoncity)
Jolene says
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!
Becky (Your Modern Family) says
Get therapy early & pray, pray, pray. Work with him, even when it seems hard. 🙂 Good luck & email me anytime (yourmodernfamily@gmail.com)
hannele Al-Hamzawi says
Hi 🙂 My son have also stiff baby syndrome. He is 12 years old now. We live in Finland. Hannele Al-Hamzawi
Becky (Your Modern Family) says
Great to meet you 🙂
Rita says
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?
Matthew B says
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.
Marcos G. Valerio says
My son suffered similarly and also is hypertonic. How is Adam now?
JACQUELINE says
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.
Nora says
Plz, how was here development? I mean motor? When did she use her hands? Rolled? Sit?
Maricarmen says
Hello, i love your blog, my baby is 9 months old and is hypertonic
He began the therapy when he had 2 weeks old
Becky (Your Modern Family) says
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?
Umka says
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
Jennifer says
What is nhs?
Beth says
Why X-ray? That doesn’t seem necessary.
The NHS is the national health service, in the U.K.
Lane says
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.
Allyssa Rider says
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 🙂
Becky (Your Modern Family) says
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.
Renata says
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
Becky (Your Modern Family) says
Are you in our facebook group?
Jessica says
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!
Nora says
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?
Mommy says
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…
Becky (Your Modern Family) says
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!
Sue w says
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.
Danielle says
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.
Becky (Your Modern Family) says
Oh, I’m so glad to hear it! Yep- our son is 6 now & AMAZING! So just keep on keepin’ on… its worth it. 🙂
Precious says
Danielle how is yo son now
reza says
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
Becky (Your Modern Family) says
My neurologist has retired, but any would be helpful, I’m sure. 🙂 Just start therapy as soon as possible- every day counts.
Erin says
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
Becky (Your Modern Family) says
No, just that he was hypertonic. Sorry.
jo says
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?
Becky (Your Modern Family) says
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.
Jo says
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
Becky (Your Modern Family) says
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)
Tamara says
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.
Becky (Your Modern Family) says
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.
Casey says
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.
Kristen says
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?
Becky (Your Modern Family) says
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!
liana says
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!
Dana says
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…
Becky (Your Modern Family) says
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.
Sanj says
Hey Becky, when did your son start rolling crawling etc
Becky (Your Modern Family) says
He was later. Closer to 8-10 months, I think?
Nora says
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
Rachel says
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.
Becky (Your Modern Family) says
I’m so glad that you are going to a PT. Come back & let me know what they say. Good luck!
Raquel says
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.
Becky (Your Modern Family) says
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.
Susan Ryan says
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!
Becky (Your Modern Family) says
Thank you! Oh yes- prayer is huge!!
Liza Morris says
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!
Becky (Your Modern Family) says
wow- our stories are VERY similar.
Sarah says
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 ?
Becky (Your Modern Family) says
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.
Danielle says
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!
Becky (Your Modern Family) says
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…
Irene says
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.
Thejano paul says
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
Becky (Your Modern Family) says
🙂 He will!
Nora says
Hey Thejano,
This is exactly the case of my son, what was his diagnosis? Is he a preemie? And how is he now?
Rebecca Ferron says
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!
Becky (Your Modern Family) says
Keep on Keepin’ on … seriously!! He will be great & you are getting him therapy, so you are on the right path!!
Lisa says
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.
Becky (Your Modern Family) says
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.
Kathryn says
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.
Suha says
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
Becky (Your Modern Family) says
Hey Suha! I would definitely get him therapy. It was life-changing! Doing joint compressions was great for us, too!
Emi says
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
Helen says
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.
Suha says
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
Becky (Your Modern Family) says
He was just very stiff. He would also startle very easily.
suha says
thank you for getting back to me sorry for posting twice but my phone didnt show my comment
Becky (Your Modern Family) says
🙂 that’s ok!
Michelle says
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?
Becky (Your Modern Family) says
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.
Michelle says
Thanks for the feedback Becky!
Lauren says
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
Becky (Your Modern Family) says
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!!!!
Rakshi G says
Hello i want to join your facebook group .. my baby is 29 weeker and have almost same issues .. what is your group name .. tnx
NEKREIEA DUMAS says
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>
Jasmin says
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.
Becky (Your Modern Family) says
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!!
Kathryn says
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!!
Leslie says
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.
Hanna says
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!
Becky (Your Modern Family) says
Thanks! you should join our FB page. There are so many parents with children with hypertonicity on there.
Tara says
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.
Becky (Your Modern Family) says
I went through our state’s early intervention program. I would look into that if you haven’t already… and a neurologist.
Tara says
Yes we are going through a program called babies can’t wait.
Tara says
Correction! Rylee is 5 months adjusted, 8 months gestation
Kawana says
I love your blog. My son is two months and was diagnosed as hypertonic. Reading your blog gave me hope.
Becky (Your Modern Family) says
Oh I’m so glad!
Mojca says
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.
Becky (Your Modern Family) says
Oh that’s awesome. Way to go. Good luck! Keep me posted.
Mojca says
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?
Becky (Your Modern Family) says
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) 🙂
Tina says
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
Juanita cherrington says
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
R says
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.
Becky (Your Modern Family) says
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.
Robin says
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.
Becky (Your Modern Family) says
You should join our Facebook group (listed in the bottom of that post). The people in there are WONDERFULLY helpful to one another.
Robin McClure says
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.
Becky (Your Modern Family) says
Sounds just like our Beau.
kalpesh patel says
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……
gemma says
Hi Please can you let me know the Facebook page I need to go on?
Becky (Your Modern Family) says
https://www.facebook.com/groups/1651393335142673/
gemma says
Hi I would like to join the facebook group
Pooja says
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?
Becky (Your Modern Family) says
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!
Amrita mishra says
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…
Becky (Your Modern Family) says
You should join our FB group if you aren’t in it already. So much helpful info!
Worried Mom says
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.
Becky (Your Modern Family) says
You should join our Facebook group- it is really helpful & there are ton of parents in there that can help (over 130)
Sarah says
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?
Becky (Your Modern Family) says
We did. You should join our group on FB. It is so helpful.
Tina says
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!
Barbie says
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.
Kelli McMullin says
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!
Julie Hinke says
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!
Becky (Your Modern Family) says
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!!
Paul A. Sankwai says
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
Kyli Procter says
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
Becky (Your Modern Family) says
I just bought him things that he could reach for (and WANTED to reach for). The reaching across his body & up high really helps.
Chelsea Clarke says
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.
Becky (Your Modern Family) says
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. 🙂
Alissa says
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!
Becky (Your Modern Family) says
Good luck! IT is so hard to not know what is going on.
Yuliana Sopian says
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
Becky (Your Modern Family) says
He never took medicine, but we did do a lot of therapy.
Yes, just search hypertonic children or hypertonicity
Shareena Smith says
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
David says
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!
Becky (Your Modern Family) says
He was slow to walk, but it happened around 16 months, I think.
Tami says
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
Cassandra says
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
Becky (Your Modern Family) says
I’ll be praying for your sweet baby, too.
Steph says
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
Becky (Your Modern Family) says
Our son never ate well, either.
Ebenezer says
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
Amy Zirkle says
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.
Jenna says
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.
Becky (Your Modern Family) says
Thank you so much for writing.
Charity says
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!
Amanda says
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
Chandrashekhar PB says
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.
Heidihh says
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.
Jessica says
Did they get your son any equipment”? Stander? SMOs?
Becky (Your Modern Family) says
No – they almost did let braces but didn’t need to once he started therapy.
Andrea says
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!
Becky (Your Modern Family) says
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.
Stephanie D says
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!
Jus says
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!
Becky (Your Modern Family) says
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.
Anika says
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.
Amy Shepley says
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!
Ashar Ali says
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 ?
Abiola says
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.
Lindsay Ingram says
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/