SN FAQ: Torticollis & Plagiocephaly(flat spots)
Assembly_Reqd
member
Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.
My child has a flat spot or maybe torticollis and I am concerned.
Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get? (type of plagiocephaly & degree)
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
If you did therapy for the torticollis, when did you start, how often and how long were the sessions?
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
Some helpful links:
Re: SN FAQ: Torticollis & Plagiocephaly(flat spots)
My child has a flat spot or maybe torticollis and I am concerned.
You are not alone! If you are concerned, please speak to your pediatrician. And if your pediatrician is dismissive, and you're still concerned, please pursue this.
Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get? (type of plagiocephaly & degree)
My son was diagnosed with mild to moderate right torticollis at his 2 month well visit. His pediatrician also noted his flat head, and recommended PT and repositioning--which we started immediately. (Eventually he was found to have severe brachycephaly with a cephalic index of 100% and mild plagiocephaly with a CVA of 6 mm.)
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
In our case, I saw no improvement with repositioning. My son's head was flat straight across the back and there was no effective way to keep him off his back at night when he slept. During the day, I wore him with a Baby K'tan carrier and let him nap (supervised) on his tummy. But by the time he went to his 3 month well visit, my pediatrician gave me a referral to Cranial Technologies. At 3.5 months they recommended a DOC Band and I went for a 2nd opinion (at Hanger) and my son ended up in a DOC Band at 4.25 months.
If you did therapy for the torticollis, when did you start, how often and how long were the sessions?
Aaron went to physical therapy starting at 9 weeks of age. Initially he went 2x per week, but we were able to decrease to 1x per week and eventually 1x every 2 weeks. I did the stretches prescribed at every diaper change (so 5/6 plus times per day). The sessions lasted for 45 minutes. He was released from PT at age 9 months, just after he started crawling.
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?
My son had severe brachycephaly and wore two DOC Bands from age 4.25 months to 8.5 months. It is less common to need 2 bands (and rare with other manufacturers) but his head shape was rather severe and he started young and had good growth spurts. My insurance did NOT cover this and appeals were denied (my plan had an exclusion).
His cephalic index (CI) went from 100% (SD +5.3) to 86% (SD +1.2) and his cranial vault asymmetry (CVA) went from 6 mm to 2 mm. It is 2 years later and you would never know he wore the DOC Bands. His head looks great and I am very pleased.
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
My main advice re: Torticollis is to do the stretches and see a physical therapist. This usually can be corrected if done properly. If left alone, torticollis can cause problems with balance, facial asymmetry, visual disturbances and muscle asymmetry per my PT.
My main advice re: plagiocephaly (and related head shapes) is to follow your gut. If you can live with your LO's head shape as it is, and won't have regrets if you choose not to helmet/band, that's fine. But there is only a short window of time to reposition and then helmet. I am pro-helmeting but I realize it is very expensive and rarely covered by insurance. And if your pediatrician tells you it will "round out" and it doesn't within a month or so, find another pedi or get a free consult with Cranial Technologies or Orthomerica (STAR Band) and be proactive.
Here are the scans of my son's head shape--before, during after at the end of treatment. I have a whole section on Brachycephaly on my blog (link in sig).
Bronx Zoo: Summer 2013
To read my blog, click on the giraffe pic below!
My child has a flat spot or maybe torticollis and I am concerned.
Please bear with me as it has been many years since my son had both.
Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get? (type of plagiocephaly & degree)
We talked to his pediatrician who gave us a referral. His plagiocephaly was obvious. His head was so flat that it stopped right behind his ears. He had mild torticollis from always sitting and lying in the same position. He would scream anytime I put him on his stomach and he had terrible muscle control. He never crawled, either.
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
No. It had gotten way too bad by the time we got help.
If you did therapy for the torticollis, when did you start, how often and how long were the sessions?
We were given exercises to do at home to stretch his neck..moreso on one side than the other. We started right after his diagnosis and continued for 6 months.
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?
We got a starlite band/helmet for him around 4 months to 10 months old. I am satisfied with the results.
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
Don't let it go too long and find out all you can to help your child. Do not be embarrassed or blame yourself. If your child ends up having to wear a helmet it's not the end of the world and it's more common than you may think. It really does work. We were fortunate enough to have a family member pay for it, but if you don't have that option fundraising may be the way to go. Do whatever you have to. The stretching for torticollis is so important, as is placing your child in different positions before they are able to move themselves.
Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get? (type of plagiocephaly & degree)
We are in a bit of a different situation reagrding torticollis and plagio. Our son has a lot going on and a big laundry list of stuff that had to be dealt with in his first year. Tort and Plagio sort of got kicked off the "to do" list. Torticollis was "diagnosed" by a physical therapist, who was seeing Nate through Early Intervention, at about 3 months old. We did not get the diagnosis from our pediatrician and were not even aware of torticollis, nor the possible plagio he could get from it. I honestly think we should have been educated more about this because Nate diagnosis at birth has "probable gross motor delays". He wasn't a mover and a shaker. I feel guilty I didn't know about it sooner so I could have been proactive instead of reactive about it.
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
The PT showed me some stretches to do as well as positioning in the crib. Since Nate was not a big mover in his sleep I was able to force him to sleep on the non flat side of his head (sort of semi-side sleeping) by positioning a rolled up receiving blanket behind his back and a folded up washcloth near the back of his head so he would not roll his head to the flat side. We alternated nights with this method and on other nights I used the folded washcloth as a little pillow under the his check to help stretch out and straighten the neck cords while he slept on that side. Repositioning and stretches helped a bit, but the torticollis would come and go.....PT gave a theory that sometimes when kid's molars are coming in it also causes them to twist their head because they are in pain. Sounds plausible, I guess.
If you did therapy for the torticollis, when did you start, how often and how long were the sessions?
Three months old, 1x per week for 30 minutes, but we were seeing the PT for reasons other than tort, so our time was not spent too much on that. At 5 months of age, we started vision therapy and our therapist said that torticollis can also be caused by vision issues. Sometimes children will need to tilt their head in order for the eyes and brain to work together and get things into focus. Nystagumus(eye jiggles) can cause torticollis. Nate also had nystagmus. At that point I sort of threw up my hands and thought that if it was vision related than I was wasting time doing stretches for it. We also did a lot of visual stuff to get him to look towards his non-torticollis side.
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?
None. He does have a flat spot and his forehead protrudes a bit. If he was a typical child, we probably would have got a helmet for him. He already had a bunch of accessories like hearing aids, eye patches and hand splints. I could not add another thing.
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
Don't blame yourself. The "Back to Sleep" program needs to be expanded to educate parents more about plagiocephaly IMHO. Also, there are lots of reasons for torticollis other than being stuck in one position once they came home. Vision, overall muscle tone(hypertonia) and how your baby was situated in the womb also can contribute to the problem.
My child has a flat spot or maybe torticollis and I am concerned. Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get?
We suspected torticollis and possible plagiocephaly at around 3 months, so we saw our ped who agreed and referred us to a PT. To determine what to do about the flat spot, we were referred to see a neurosurgeon who said that while this typically corrects on its own, because our son was delayed in gross motor skills and it would be longer for him to get off of his back, that we should consider a helmet. Ds had plagiocephaly and brachiocephaly.
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
Repositioning never helped because ds would immediately move his head back, so we literally would need to have done this all night.
If you did therapy for the torticollis, when did you start, how often and how long were the sessions?
Well, we started with one PT for tort exercises. Ds regained his full mobility of his neck in terms of turning all the way left and right, but he still was tilted and it didn't seem to subside. At one point it randomly went away...and then came back on the other side. It turns out that our son actually has a rare neurological/vestibular form called Benign Paroxysmal Torticollis and all the PT in the world won't make it go away. The good news is that it will eventually go away on its own between ages 2-5, and as he gets older (now 19 months), the tilts are less frequent. When they do come on though, his balance takes a major hit. This condition might be related to vertigo and/or migraine disorders.
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?
We went with a doc band at 6 months old. He was in it for 6 weeks before outgrowing it. He went from being 4.3 standard deviations away from the norm for length to width to 2.2, so big improvement. They did recommend a second band, but we opted against it b/c by then ds was off his back and sleeping on his belly. His head now looks great, especially when his hair is fuller. I can still see some plagio on one side, but it's very mild and only a trained eye would see it. I'm very glad we didn't go with a second doc band.
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
I think that if you are considering a doc band and you have the funds for it, then it's worth doing even if for peace of mind only. However, they are pricey and I've read research that most kids (something like >90%) will be corrected on their own by age 2. Also, 4 months old is the peak point at which parents see flattening in their LOs (something like 20% are affected), so it's super common and worth trying repositioning for a few months first to see if it helps. And again, we actually were dealing with BPT, a slightly different animal. However, all the neurologists, etc... in the world would not have been able to diagnose this until we realized the tilt would come and go and switch sides, so it's something that only time will be able to tell you. It is worth getting an ophthalmology exam though just to make sure the tilt isn't driven by an eye issue.
My child has a flat spot or maybe torticollis and I am concerned.
DH and I had no clue. We thought it was so cute that she was always posing withher head to the side for us. If only we knew, lol.
Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get? (type of plagiocephaly & degree)
DD had other health issues, so it wasn't until her 2 months appt that my pediatrician really noticed. She asked us is DD's head was always tilted and we said that it was. She said it was likely Torticollis and she showed us a stretch to do at home. Her other health issues were more severe and her Tort was pushed to the back burner until the other issues started to improve. At 5 months, she was officially diagnosed with a 30 depree tilt due to Congenital Torticollis at her EI eval. She was also diagnosed with mild Brachiacephaly due to her Tort.
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
We did head repositioning during sleeptime. Also, we used rolled up receiving balnkets to straigten her head when she was in the car seat and stroller. Per the EI evaluator, DD was not allowed in her swing anymore and we increased tummy time by quite a bit of time. Her Tort didn't get any better, but it also stopped getting worse, so I like to think that it helped. Her brachiocephaly improved slightly.
If you did therapy for the torticollis, when did you start, how often and how long were the sessions?
We started PT at 5 months, 1 hour a week, for 4 months. Our therapist trained us to do the stretches at home. There were 11 different stretches, we would do each stretch time times each cycle and hold each stretch for one minute. We would do four cycles of stretches a day. It was time consuming and she protested loudly, but we started noticing a difference after just a week or two.
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?
She was measured for a doc band, but insurance wouldn't cover the cost. After discussing it with her pedi, PT, and Orthotist, we decided against getting it. Her brachiocephaly was always mild and the prevailing thought was that her head would round out on it's own. I am glad we decided on this, because it has become a very round noggin.
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
The earlier you can start the PT, the easier it is. We graduated from PT when DD was 9 months old and the stretches were getting VERY hard to do because of her strength and mobility.
Also, Torticollis can lead to other issues such as uneven cranio/ facial development and groos motor delay. If you suspect your baby has Torticollis and you feel that your pedi is not taking it seriously or telling you that your baby will just outgrow it, seek out another opinion.
DD, at 2 months of age, 2 months before starting PT
DD, present, 2 months after graduating from PT
Some helpful links:
https://www.cranialtech.com/
https://www.starbandkids.com/
https://www.torticolliskids.org/
My child has a flat spot or maybe torticollis and I am concerned.
-Definitely bring it up at the well being appt. If the doctor dismisses it, and says it will correct itself and you feel it won't, keep pushing back. I know plenty of parents of kids with craniosynostosis who were told it would correct itself and never did. Then they had to have it corrected when they were older. It is way easier when they are babies.
Who did you see to diagnose the torticollis or plagiocephaly? What kind of a diagnosis did you get? (type of plagiocephaly & degree)
-My son didn't have plagio, but craniosynostosis. Which means his soft spots were already fused. It's not the same but similar experience because it causes a misshapen head. We were originally diagnosed by our family doctor and she referred us to the cranial-facial program at the Children's Hospital. The surgeon then confirmed the diagnosis.
Were you able to do anything yourself to correct the problem before moving on to more expensive interventions? Did repositioning help?
What type of medical interventions did your child have? (surgery, doc band, helmet, none, etc) If you got a helmet/doc band, what age and how long did your child wear it? Are you satisfied with the results?-Repositioning can definitely help. Also, visiting an osteopath can help and is cheaper than the helmet!
-The only way to correct cranio is through surgery. Then after his surgery Nathan had to wear a helmet for a few months. He was 6 months when he had the surgery and 9 months when he had the helmet removed. The difference from before the surgery to after the surgery was unreal. Then the helmet helped finish a Charlie Brown shaped head.
Do you have any other advice for parents dealing with their child's torticollis or plagiocephaly?
-Go with your gut, and definitely speak with your doctor or osteopath (especially if the doctor is giving you the run around) if you think there is something wrong. Don't just wait around to see if it will fix itself. Nathan's never would have (but as I said his was cranio, so a bit different than plagio).
The Beautiful Mommy Blog
The Beautiful Mommy Club
There is another form of torticollis called Benign Paroxysmal Torticollis (BPT). It is very rare (and undereported). It presents itself like the regular torticollis but the tilting of the head switches from side to side at intervals.
My son was diagnosed with Torticollis at first but I noticed that after a PT session and the stretches he would tilt worse even if he went to therapy with his head straight. So I stopped PT. Even the therapist couldn't figure out what it was. She even admitted that this was not consistent with Torticollis.
Long story short this condition presents itself with a lot of variety but the most common are the head tilts, a lot of kids have vomiting, migraines, ataxia. These episodes sometimes last anywhere from a few hrs to a few days. Tilts sometimes last for more than a month.
There are two facebook groups where there are parents of kids with BPT. One is a closed group for only parents with BPT kids and the other is open so like PTs, doctors, whoever wants to learn more.