Seeking Moms of Children with Torticolis, (Crick in the Neck)

Hi A.,

I am a Chiropractor and a mom! I have treated several children with torticollis with amazing results. They typically respond very quickly to chiropractic care. We also can do cranial technique to help reshape her head. It is a very gentle, relaxing technique that babies tend to love. If you have any questions please don't hesitate to call me at ###-###-####. Thanks! Dr. Sandra S.

My newborn was always looking right...in the swing, in his crib, in his carseat, etc. so at his 2 month appointment they showed us how to do neck exercises (chin to shoulder on both sides and then ear to shoulder on both sides). We did them everytime we changed his diaper. We would hold each position for 10 seconds...he didn't mind it at all.

We also swaddled him up in a Miracle Blanket and put him on a positioner to keep him from looking to the right. We would make him lay on his left side.

It didn't take that long for it to be corrected. He still has a bit of a flat spot so we will find out if he has to wear a Doc helmet. His head was REALLY getting flat on the right side there for awhile!

Do those neck exercises and see if it helps. Also the sleep positioner (which I was told not to use so I didn't until the Dr. said to make him sleep on his left side).

Good luck!
C.

I had to put my son in a Doc band (helmet) from age 4-6 months. We started exercises, basically just stretching, for tort at about 3 months. Your doc should be able to give you the exercises, or even go for an evaluation at Cranial Technologies http://www.cranialtech.com/ Their evals are free and they'll tell you which stretches to do whether or not you end up choosing or even needing the helmet. Really, all you do is hold them down and gently turn their heads to the stiff side and hold it for a few seconds several times a day. If you have any further questions, feel free to email me. I know it can be a stressful time. Looking back it wasn't so bad, but at the time I was devastated and so worried about it.

my son had torticolis also. i can't recall exactly when it was diagnosed but i think it was at about 1-1/2 to 2 months of age. it scared me but it really wasn't a big deal at all. we just did treatments at home for about 1 month and everything was fine. he had a very large lump that we had to massage and then we had to forcefully turn his head towards the opposite side to loosen everything up. he's 2 now and no problems!

Yes, two of my children had this. the ped. dr. did not listen to us with my oldest. He had to wear the helmet. Is just fine now! My middle one had phy. therapy and was just fine. It will affect the head shape if you do not correct it.

My son had it as well and we did PT from about 6m to 1yr. He is three now the flat spot he had is for the most part gone, as a mom when I have his hair wet and feel his head I can tell a little, but nothing visible. Never required wearing a helmut etc. It's very good that you are catching it so early. The head is still very soft at that age so it will have an opportunity to reform and the physical therapy will help stretch out the tight muscle and strenghten the weaker muscles on the opposing side so you daughter doesn't favor the one side so much. You have time to correct with the PT. They should give you some "homework" as well so you can continue the appropriate stretching and strenghtening at home between appts. Be sure you do them as directed by your PT. I'd also recommend the "memory foam" style pillow they make to help cushion her head a bit when she sleeps. You can find them at babies r us etc. Best wishes!

I know I'm a little late on this reply, but try chiropractic!!!! :) I am a chiropractor and I treat this sort of thing all the time with amazing results! My latest case was a newborn that broke his collar bone during delivery. He had torticollis on the opposite side. I started immediately treating him and he clear up with in 2 weeks. It is amazing how fast babies respond. Let me know if you need help, I am in Irving. J. Dagnan Bargy. ###-###-####

with good physical therapy and the parents doing a good home program, your child should have no problem. I have never heard of a helmet being used for torticollis unless the parents never lay the child on the opposite side to stretch the neck.

My son had been diagnosed with torticolis when he was about six months old. We noticed a problem around two to three months but waited before doing anything as we tried to reposition him while he slept. Our pedi was not very concerned about his head shape but we could certainly see that he was flat and a little "off" if you looked at him directly. With that, we went for an eval at the Fogelson Cranial Center in Dallas. They were wonderful. The measured him and found that he did indeed need a helmet. Based on insurance, our provider options for the helmet were limited. We found a fabulous company in Hurst and went through their program. He had three helmets (he hit a growth spurt after his first helmet and outgrew it in a month, second did not fit right so they made another, the third lasted about six months) and wore them for about eight months total. After that he was reevaluated at Fogelson and he was almost perfect. His misaligment at that point was only in one area and I believe it was about 2 MM at that point. It was truly remarkable to see the before and after pictures of how his face/head looked.

We also tried PT but that really did not do much for him. They gave us exercises to do at home, but they were somewhat difficult to do with a little one. He eventually grew out of it. He is now almost three years old and you could not tell that he had a flat head. We can see it a little, as his parents, but those that don't know his history don't see it.

My third son was also getting flat so we got him evalutated, as well. We tried some repositioning with him early on and it worked out. By the time we took him for his appt his head was "normal". I thought about cancelling the appt, but I figured for the price of a co-pay he would have a complete exam and I could put my mind at ease.

If you call the Fogelson office it takes about six to eight weeks to get in. You are better off making an appt now andhe exam. If your child does improve I would recommend getting the exam anyways. It is completely pain free for the child as now they just do a quick scan and a few measurements. Loa is wonderful and is great with the kids.

Don't wait...get it done sooner rather than later as it will give you more time to correct the problem, if there is one.

I would be happy to discuss further if you want...just let me know...L.

My daughter Madi was diagnosed with it when she was 3 months old. We started physical therapy as well and went through the whole spill that she might have to wear a helmet. I was very concerned but as long as you get your child into physical therapy you should be fine. My advice to you is to work on the therapy outside of the actual appointments. My daughter did it for 3 months and then did not need it anymore or the helmet. Good luck! Where do you live? I recommend the Children's House of Baylor.

My eldest son had severe torticollis as well as a deformation of the head. Unfortunately, several peds that we took our son to said that it was just a misformed head, sorry. Well, our ped finally came back from maternity leave and said that there was a severe problem and we went directly to Cook Children's. We had to put him in the helmet (which is a story in and of itself) for almost a year. He still has a major ridge on the back of his head (he's 7 now), but luckily hair covers most of that.

Ok, now that the "bad" news is over, here's the good news. You and your ped caught it in plenty of time to work around the skull reformation/deformation. Turn her constantly, so she's not laying in one spot constantly, give her plenty of tummy time (without sheets/blankets bunching up around her) and work through the PT. It does help, I promise.

I would do my best to avoid the helmet at all costs (i.e. really work through the PT), especially if she has skin sensitivities, et al. Brandon, my son, had major problems with the helmet- major rashes, breakouts, and other skin irritation. After a year of being in the helmet (and shelling out $2200.00 for the helmet alone), they told us that we needed to get Brandon in another helmet. We didn't see the results that we had anticipated, so we decided along with the neurosurgeon, to forgo another year of the helmet and just focused on the PT. BUT, let me also interject that he was almost a year old when they got him into the helmet, so he wasn't an "ideal" candidate for the helmet.

Ok, that was really rambly, but I just woke up and haven't had caffiene yet. Sorry! :-/ I hope that helps a bit.

If you have chiropractic benefits through your insurance, I would check into that, along with the PT you are doing for your daughter. Chiro's are specially trained to manipulate the spine into place without doing any damage to your daughter. We go to Alliance Pain Center in Carrollton, and they also have a location in Dallas. You might also want to call Parker Chiropractic College in Dallas. The students who actually work with the patients there are graduating Seniors, and they work with a Licensed Chiropractor, who will also be very close by, if not *right there*. The only reason you would need a helmet for your daughter is if she is not able to turn her head, causing her to develop a "flat" spot; the helmets are designed to keep the head round. I also agree with you on the insurance ~ they're just a bunch of JERKS who have BUSINESS degrees, and don't know a bless-ed thing about MEDICINE. (And who in the world gave THEM the right to tell DOCTORS how to do their jobs?????)
You can email me if you want the number to APC or Parker, or if you have any more questions. Good Luck with your daughter! I'm sure she'll be fine. :)

~J.~ ____@____.com

My daughter also has torticolis. We started taking her to a pediatric chiropractor at 6 weeks old to help with her acid reflux. I'm not sure when we discovered the torticolis but it wasn't long after that so she started treating her for that too. My daughter's Pedi noticed it at 3 mo's and she wanted to wait until her 6 mo check up to see how she is doing with it. At her 6 mo check up she recommended Physical Therapy. My daughter was just sitting up then and it was very noticeable. I asked the Pedi about a helmet but she didn't feel it was neccessary at that time. My daughter had a slight flat spot on one side of her head but the Pedi was sure her head would round out the more active she got and the more her skull grew. She also said as her muscles grow her neck will strengthen. I continued taking her to the Chiropractor and that helped significantly. On her 9 mo check up (in Sept) her Pedi didn't even notice the tilting until I asked about it, because it was so slight. Once she saw it she said that Physical Therapy would still be a good thing so I started her on that just recently. She has had one session and her PT is confident that she will be fine with further treatments. Your PT and Pedi should make sure that your baby's face is cemetrical (eyes line up, ears line up, etc..). You are doing the right thing by getting her treatment early on. I was very concerned about my daughter too but she is developing just fine and the Pedi, PT, and Chiropractor were and still are a great source of encouragement to me. Hope this helps.
B.

A., we were told my daughter Emerson had toticolis at her 4 month check up. I was devistated. I had never even heard the word. But, we did the physical therapy (we started out taking her once a week, then once every other week and then once a month) plus we really worked the exercises at home and made her daycare made a real diligent effort to help as well. She is now 16 months and we just had her picture made and I am proud to say her head/neck were straight up and she looked beautiful. Her doctor said the same thing, that a helmet might be necessary, but she never had to wear one because the therapy took care of it. I notice it every once in a great while...escpecially is she is sick, she reverts back to it. But, 99% of the time, you would never know. I posted a similar question on mamasource when I found out and I received a lot of encouragement. Plus, it made me feel better than toticolis seems to be a lot more common than I realized. I was also told it is more common in girls and if they were c-section (which my daughter was) Good luck. I know it will all be fine...just go to the therapy and work with her a lot. We made a game out of it. Once you are aware of it, there are a lot of little things you can do - put her toys on the side she needs to stretch, feed her in a way that makes her look to that specific side. You can do it and she will be fabulous, I am sure!

A.,
My son was diagnosed with torticollis as an infant - we did therapy etc...At the age of 1, we realized that he had strabismus in one of his eyes and that caused him to tilt his neck in order to see better....we had eye surgery and no more toticollis!! Strabismus problems run in my husbands family so it was a genetic thing...maybe that will help!

Hello! I am a 26 year year old that have dealt with torticolis and want to share my experience. MY neck was not severe by any means. To the point my parents had no idea I had it until I got older. However in middle school kids would notice and ask me why I leaned my head to the left. Some inter city kids would make fun of me. Finally my parents and I made the decision to have surgery. I was in the hospital for a few days getting my equilibrium adjusted while my neck healed where they cut the muscle on one side to stretch it out. For a few months I had to wear a neck brace. It looked almost like a car accident neck brace. The recovery was rough. However without the surgery I don't think I would have seen the results that I was looking for. I have a tiny scar on my collar bone and one behind my ear. No one even notices it.

Occasionally throughout the years I notice that my shoulder will raise a bit and I make sure to do little stretch here and there. I also try and see a physical therapist every 4 years to get a "good" stretch in.

The reason we did the surgery is because we worried the older I got the muscle would become more "tight". You can only do so much stretching which then is just plain annoying. I can provide pictures if anyone would like to see what I looked like before, after and now.

I hope this helps and please let me know if you have any questions.

L.

One of my twin girls had severe torticolis and started aggressive PT at 3 months. She went 2x a week plus we stretched her all the time at home and never needed a helmet. The key is to follow through on all the stretches at home. WE used Kid Networks of of 635 and Hillcrest. LOVE them and still use them for developmental physical delays for our now 16 month old.

I know this is late but I want to tell you what happend with us. Our daughter was born with Torticollis as well. We didn't notice it until she was 2 months. Her head was starting to flatten on one side (Plagiocephaly) as well due to this.

We were given the option of doing PT and wait and see if her head rounds out or do both PT and get a Doc band. We chose both...and the result is GREAT! Yes we did have to pay out of pocket $3000 because ins would not pay (due to a clause specificly stating bands in our plan) for the reason you stated. Even though it was caused by a medical problem. If we would not of done anything our daughters face would of been pushed forward on one side. I couldnt live with that! I would of paid any amount of money to fix her.

My advice do the helmet! The longer you wait the harder it is to fix. She was in it for only 2 1/2 months and only needed one band. There is still a slight flattening on the back of her head but no one can tell but us. She got used to it very quickly...never caused her any problems. I even decorated it so it wouldnt look so medical.

If you would like more info on our experience and I can even show you the band she had to help with your decision.

The little girl I watch was a preemie and suffered flattening on the back of her head so much so that it started to cone. Her mom didnt want to do the band but I strongly reccomened it. Her ins did pay (lucky them) but she is so glad that she did do it. They went with a Star Band.

Good luck!

My daughter is 5 months old and we just went through PT. I expect at her 6 month check up to be told she will need a helmet. She sleeps on her tummy and 95% of the time she is only sleeping on her right cheek which has caused that side of her head and cheek to be more flat than the left side. The PT visits were very helpful and after 2 visits she looked so much better. We spaced them out for 2x a month. I actually got lazy and stopped doing the stretches because she was looking so much better and now she is tilting again. We went to Plano Presbyterian for the PT and had Rosemary as our therapist. Just be sure to address it now as children learn to compensate for the tightness when they are older and it is very hard to correct the tilt and tightness!!

Our dd was finally diagnosed at around 8 months. Even with the delayed diagosis and some facial and head deformities we were able to just use physical therapy to fix the problem. She went to physical therapy weekly for a year and we did the stretches at home. (This was challenging since she can be very stubborn and did not like the stretched). She is now 2 & 1/2 and you can't tell that there was ever a problem. Our doctor told us that the head in rapidly growing until the age of 2 and any deformity can be corrected fairly easily up to that age. (By the way, she is still very stubborn and opinionated. I guess there is no easy cure for that!!)

A., My name is B. and our son had the same problem with his head shape. We did the helmet and it worked great! It is important to do this because if it is not corrected it can cause some problems down the road. I can understand the Doc. wanting to wait to see if it goes away. Are you giving her anytime on her tummy? I know we were so afraid of doing that, and that is what caused our son's head to misshape, you just have to be careful and not do it during the night, but give her tummy time during the day when you can observe her. I am glad you are getting the PT for her neck there is also something called cranial sacrial therapy that might also help her neck the best one I know is in Plano her name is Sally Fryer.