Hey Moms. Anyone out there with a baby with Torticollis/Plagiocephaly that required a helmet or cranial remolding orthosis. Just wondering your experience and overall thoughts on the matter. I want my son to have a normal shaped head. Is that wrong?
Thanks everyone! Just to let you know, this is exactly how I feel. I am getting Zach PT from early intervention services and he is doing amazing. He was never able to look to the left and he very rarely used his left arm or leg. I'm not even sure if he knew they existed. The poor thing was "stuck". That's how my therapist labeled it. She can't believe that my pediatrician didn't have me get therapy for him sooner. I noticed it from week one and kept asking and she kept saying it wasn't bad. Mommies out there, go with your gut. I had people telling me I was crazy. My pediatrician won't rx the helmet so I'm going to see a neurosurgeon. I hope he will agree that is should be offered to my son. I will not stop until I get him evaluated for it. My husband doesn't see it and is very unsupportive. He thinks I'm crazy. Thank you so much for your responses. Keep them coming. Please if anyone remembers who actually prescribed the helmet/measurement please let me know. It seems that not all specialties feel comfortable with it. Thanks again!
find a chiroprator that can do cranial sacral massage therapy. This will help to get things moving in the correct direction. www.icpa.org
The helmets are ok, but by having this treatment (probably weekly) it will help his head to develop a good shape. Even with the helmets, you can't get them fast enough to keep up with the growth and to develop a good shape of head
Hi, G.:
Check out with the Atlas Orthogonal Chiropractor, James Stein in Norristown, PA and ask him about how your son can be helped.
Good Luck. D.
Hi G.,
I am going through this right now with my 6 month old daughter. The pediatrician caught the torticollis when she was 2 months old, I took her to physical therapy for 2 months to see if that would help the shape of her head. We were trying to avoid the helmet bc her case wasnt that severe. When we went back for her 4 month check up her torticollis was much better but she still had a crooked head, so we decided to get the helmet. My daughter is now a little over 6 months and her head is looking beautiful. I highly recommend using the helmet, it has worked wonders on my daughter, her head is rounding out so nicely. I am so glad we did it and my daughter took to the helmet right away. We thought how cruel it was that she had to sleep in this thing and have this thing on for 23hrs a day, but she really has not fussed about it even from day one. She has been a really good sport and the results are worth it.
I hope this has helped convince you to go ahead with the helmet, I am a true believer in it now. If you have any other questions and want to contact me i'll leave my email address ____@____.com, feel free to contact me.
My pediatrician is very pro helmet. I don't know where you are from but Dr. Heidi Fleischman from Marlton Pediatrics in Marlton, NJ is who wrote the script and convinced me to go ahead with the helmet. We had the scan done at Harry J Lawall's in Philadelphia, but the Dr see her at his Cherry Hill location for fittings every couple of weeks. We have been very impressed with them. I hope that helps
Vicki
Hi
Both my brother's and best friend's little boys had this, my brother opted not to go for the helmet but my best friend did. The difference, my brother's boy's head does look a bit different and my friend's little boy's head looks 100% normal.
She did get a second opinion before making her decision and said it took a week to get into the whole routine of cleaning it and making sure he wears it for the right amount of hours which were increased daily. She also said that she wished she had done it sonner rather than later as obviously there is a window period in which it can be done and is effective (they did just in time), also younger babies fuss less over the helmet whereas older babies might need some time to get used to the helmet especially in summer when its hot and sweaty.
Initially people stare and ask questions, she had to get over that quickly and always had a standard answer ready that was short and simple.
Hope this helps!!!
We did the helmet with my son a little over a year ago. His head is still not perfect but it definitely did wonders. I do remember that we went to a few doctors. The one that actually wrote the script was local but I had to go to Hershey just to look into it furthur.
You do have to be pushy sometimes to get what your children need. Don't be afraid to get a second or third opinion. My husband wasn't very supportive either. But my son made the measurements for it to be covered through the insurance without a fight.
Do what you think is best. I'm sure most people would prefer to wear a helmet as a child rather then be left with a mishapen head. My son didn't mind it at all.
Hi G. --
My older daughter (who is now 6) was diagnosed with plagiocephaly around 6 months of age and wore a corrective helmet for about three months from 9-12 months of age. Her case was moderate at the start, but the helmet almost completely corrected the flat spot and you'd never know now that she had an issue. I know that plagio can be more of a problem for boys because their hair doesn't cover the flatness as well as girls' hair tends to.
We chose to get the helmet because our pediatrician and a plastic/orthopedic surgeon both recommended it to avoid other issues further down the line (jaw issues, for instance). My daughter's helmet was made by Cranial Technologies and they could not have been more helpful. Please feel free to message me directly if you'd like more information.
Good luck to you and your son.
H.
Hi G. -
My duaghter wore a helmet starting when she was 4months old 23 hours a day until she was 6months, then she wore it during naps, long car rides and at night until she was 11 months. It was the best decision we ever made regarding her health. She was so young she didn't mind it (mostly), and the time went VERY fast. Our dauther had plagiocephaly due to her sleeping postion & the way she was curled up in utero. She didin't have torticollis, so I expect that you'd also need to have therapy for her since that's a neck muscle issue.
Anyway, the sooner you do this the better. Do it while your son's skull is still soft enough that he wont need to wear it for years. It's not just a cosmetic thing. While his skull features will not align the way they're supposed to either, the big issue is the development problems that are possible if left unchecked.
We had a wonderful orthotist that even came to our house at first to assess our duaghter and do the mold for the helmet. Her name is Allison Kimura. When we last saw her, she was working out of a group in the Plymouth Meeting Area. If you'd like, you can send me a message and I'll find her information.
Bottom line - you are NOT wrong fro wanting to take care of this!!
Been there, done that. The helmet was very helpful. I would also recommend that you look into physical therapy for the torticollis. If torticollis isn't treated, your baby's horizon line with re-establish and his vision will be altered. Also--the longer it lasts, the harder it is to correct. It isn't just a vanity thing... You really want to correct it...
good luck!
Hi G.! We're going through this right now. My son has had his helmet for about a month and a half now. He did PT for the torticollis for about 6 weeks or so. We had mentioned concern about his flat spot to the pediatrician and she sent us to see a neurosurgeon so we saw Dr. Piatt at St. Christopher's who then gave us a slip for PT and sent us to Lawall & Sons for the helmet. They are fantastic! Their main office is on Frankford Ave, but they have locations all around the area. We had some minor issues when we first got the helmet but things are going well now and my son doesn't seem to even notice it. Anyway, if you have any specific questions or anything, please feel free to contact me either on her by PM or you can email me at ____@____.com and I'm more than happy to discuss it with you.
My son who is now 3 had a really bad shaped head from sleeping on one side all the time. I keep telling his doctor, but he wasn't worried. Finally he had another doctor, his doctor was out of town, and this doctor was as concerned as I was, except it was too late. He was almost 18 months old. The bones were formed. We had an ultrasound on it and his brain was normal, Thank God. He was never diagnosed with any disorder, he would just prefer that side even when I would turn his head at night. My sons head is misshaped and it makes me sad. It has gotten a little better and having hair covers it up. My point is if you are concerned talk to your doctor and if you don't like the answer find another doctor. Good Luck.
