About Torticollis and Plagiocephaly

Updated on September 24, 2007
K.S. asks from Cocoa, FL
6 answers

big words for those who have no idea what they are right?? i have 6 month old absolutely beautiful and perfect twins. the first born, my son, was quite "squished" in me where as my second had ample room. no surprise that my first twin has torticollis and plagiocephaly. we have been going to PT for a couple of months, and where as the torticollis is so much better (not fully but a vast improvement), i can not tell about the shape of his skull. i know they say that it will reshape within the first year, but should i be concerned? if anyone has been through anything similar i would love some input! thank you so much!

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answers from Orlando on

K. - my daughter is 5 years old now and had both tort and plagio. I was also told it would reshape - but it didn't. We went through the helmet therapy at about 8 months old, and she wore it for 3 months. Her head is not perfectly round, but it helped tremendously! You can't tell unless you know what to look for, and of course as parents with a plagio child, we can! I think I checked with a few yahoo groups before making my decision. Plagio can affect their ears and eyes being off center if not corrected. She did have a CT scan to make sure the bones weren't fused prematurely before she had the helmet. The helmet sounds worse than it really is - 23 hours a day - but they do get used to it. And it helps when they are learning to crawl and bonk into things. Good luck in your decision.
By the way - she's now a beautiful blonde kindergartener - and you would never know she was a helmet baby!



answers from Fort Myers on

My friend Julies son has plagiocephaly. But I think that his head looks just like there other son's head who is 8 and her head for that matter. The Doc wanted there son to go for helmet therapy and she did for a couple of months until the helmet started leaving marks/scratches on her sons head. And she has since stopped therapy and his head looks fine to me and to them. I think that the head shape of her son is something that just runs in there family.... he has a flat face and the back of his head is flat but again so is her other son and hers...



answers from Gainesville on

Hiya K.,
I have had the same problems with my twins. I didnt know wwhat to do about my sons head the way it was forming until i talked to my PT about it. He said to try to make my son lay on the other side then the torticolis and get alot of tummy time. Hope everythimg works out...L.



answers from Lakeland on

I am very familiar with torticollis & plagiocephaly. My daughter was diagnosed with both when she was 4 months old. Her pediatrician didn't want to "wait & see". She sent us to a pediatric neurosurgeon in Orlando. He ordered a CT scan & determined she was a good candidate for a helmet. She wore the helmet for 4 months with amazing results. In addition, she had PT in Lakeland for the torticollis. Looking at before & after pictures, it doesn't even look like the same head. That's how much of an improvement it made in her. She's 2 now & you would never know she was a helmet baby.

I would absolutely do it again if I needed to. I spent a ton of time online researching torticollis & plagiocephaly. If untreated, it can cause many other problems later that can only be corrected by surgery.



answers from Lakeland on

Hi K.,
My son, who is now 6, was born early and with tort & phagio both. In utero, he was very low and wedged behind my pubic bone for so long that the right/back side of his head had a large flat spot and his neck had been twisted in the position so long he had torticollis. You are on the right track with the therapy!! My son started therapy at 3 months and wore a helmet for a couple months. The neurosurgeon ordered the CT scan to determine the type and severity of the phagiocephaly (was moderate) and also ordered the helmet and therapy. He said a CT is the only way to determine the type of phagio and this is critical, some types the bones fuse and requires surgery and you can not tell this by just looking a him!! The CT is easy...we had ours at Arnold Palmer in Orlando and they squirted a little liquid medicine into my son's butt to make him sleepy and not move. The scan took about 5 minutes and he woke up about 1-2 minutes after that in my arms and was completely fine.

The therapy really does work for the tort. I'm glad you are seeing good results. We made a diaper change rule....with every diaper change he got a couple minutes of therapy from us. We also massaged him a LOT! His head was repositioned every hour all night until his helmet arrived. The helmet was a pain in the rear and he hated it, but it definitely did the job. Today, his head is close to perfect, nobody can tell but us. The torticollis is gone as far as I can tell, but if I rub his neck/shoulders, the one side always feels like it has a tighter muscle than the other. Insurance gave us a fit over the helmet, so be prepared, if he needs one, you may have a fight on your hands. Our docs had to write letters to Cigna to get them to pay and they still only paid a small portion (took a year). My nephew had phagio WITHOUT tort and did not need a helmet, his neurosurgeon said that the tort and severity are the determining factors for the helmet. The tort it will continue to pull the head to make the flatten area worse and keep the head from growing into a normal shape. The helmet will prevent the eventual bulging of the forhead and drooping of the ear on one side. When the doc(neurosurgeon) told us about those things and showed us the photos of what could happen without the helmet and therapy...we got the helmet right away. Therapy was 2x/wk initially then 1x/wk. Another thing you can do is to put things in the car, crib, swing, etc... on the side you want him to look over toward and reach toward to make him want to turn his head that way. By the way, after the helmet, we never had to go back to the neurosurgeon and everyone in our family could tell the difference in his head. So be diligent, stay calm and fight for whatever you son needs....you are his hero and advocate. Good luck. By the way, my son is so adorable and smart smart smart...you would never know that he was a helmet baby!



answers from Melbourne on

Hi my son also had tortacallus and plagiocephaly.We opted for physical therapy and the starband. We have since graduated from physical therapy he stills wears the helmet. I have a support group at cafemom.com, its under groups, its called "helmetheads". Come join!! This group is also open to parents who's children have graduated from the bands, and moms who want to learn more! Pretty much everybody who needs support or more info on this subject and people who would like to share their experiences! Hope to see you there!!!! I also have pictures of my son in his band for all to see, feel free to post your own!

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