Plagiocephaly caused by Torticollis

Alicia - posted on 04/04/2012

oh ya if anyone wants to chat im on facebook started a thing there here the link its called bostonband http://www.facebook.com/plagiocephalybos...

Alicia - posted on 04/04/2012

my daughter is 7 months and i was telling her doctor since she was a month there was something wrong i didnt know there was a name for trot or plagio and i looked online for ever and i since him at her 4month check up and he said ya her neck is tight it will work it self out and didnt say there was a name to it. i did more research and i finally figure it out and we got fitted for a helmet and hopefully pt starts soon. when they made her helmet it was made to small they sent us home and she ended up with a red spot we took her back to a differnt company and they took out alot of foam and now she happy with it .

SUZANNE - posted on 03/15/2012

my son has tort and plagio and was diagnosed when he was 8 months. we have done extensive pt mentally and physically. he is not 3 years old and has 95% range of his neck. his head has rounded out. we did not get the helmet due to the long process it took for the paperwork he had reached the maximum age. the problem i am facing now is speech, cognative, emotional and social delays as well as temper tantrums that defy all odds. no matter how i go about defusing the rage i can not. he has also been getting migranes which i have read can occuur sometimes. he is now in the process of getting into the older therapy program, long term care, and waiting on disability to help us out. he is in a preschool that specializes in disabilities but intregrates regular children with ones with disabilities. this has helped enourmously with his self esteem.

Jamie - posted on 02/11/2009

That's very encouraging that you are already seeing improvement. Kids and babies are so resilient!

Sandi - posted on 02/11/2009

Timothy "looks" the same direction, but I guess it wasn't as pronounced so the doctor didn't catch it in the first visit and they kept telling us that the head shape would correct on its own. I feel like it could have been diagnosed earlier if they had actually listened to us, but it was by no means too late to do anything which is good (I think after 6 mos it gets a little more difficult to correct). I am finding that this along with the helmet is becoming a lot more common, and I can actually tell a difference in the shape and range with 1 month of physical therapy and 2 weeks in the helmet. Hopefully in a couple of months he will be good as new and ready to hit the beach and his first birthday helmet free. So far he hasn't developmentally been affected so this should be short lived. Kids are pretty amazing in how fast they grow, so it is great we found it out in the first year when it is much easier to fix. I am so glad that you had great results.

Jamie - posted on 02/11/2009

No you're not alone. I am finding that it's actually quite common. When we first found out about it I felt terrible about it, even though like you said, it's very minor compared to other things you could be dealing with. Nyla could only look to the right (straight ahead only if you held her head in that position) and her head/face looked slightly cockeyed from the front and was very flat on the right side in the back. We did physical therapy for almost 3 months (age 2 months to age 5 months) and her range of motion and strength in her neck and upper back are completely normal now for an almost 7 month old. By Christmastime you couldn't even tell there was ever an issue.

On the head shape, they told me not to get anxious because it could take a very long time to round out. They said it could take twice as long to round out as it did to flatten. or maybe till she was close to a year old. However, her face is completely symmetrical from the front now and already very rounded out in the back. I can still see where the flat spot was, but that's only because I study it. The back of her head is nearly perfect now. Their heads must be like rubber when they're born!

Sandi - posted on 02/10/2009

I had never heard of it before Timothy was diagnosed, I just never knew to look out for that. It is awesome that your daughter's was caught early. She is absolutely adorable by the way. How is her range of motion these days, was she able to get it to normal? Timothy is doing well with his physical therapy and actually has adjusted to the helmet quite well (which was quite a shock...what looks like a football helmet for 23 hrs a day seems like a lot to take in). I keep telling myself something could be really wrong that we couldn't fix, so I thank my lucky stars every day. Thanks for responding...it's nice to know we aren't alone.

Jamie - posted on 02/10/2009

My daughter had the exact same thing. I still may not be much help because she was diagnosed early and did not have to use a helmet. Nevertheless I have learned a lot about it!