Torticollis - Any Advice?

Hi M.-
I am an SLP with EI in IL an am so sorry to hear that you've had a problem getting services. You shold just be able to call and get an evaluation. I work with a family with a child with torticollis so I'm going to forward your post to her and maybe you can connect. Please keep trying with EI - it's wonderful. Actually, what is the strugggle you're having? Maybe I can make a specific suggestion.
J.

I have no experience with this myself so feel a bit weird weighing in but.... Even though I NEVER believed in chiropractic work, I ended up seeing a chiropractor during my pregnancy. Crazy, I know. While I was there for a treatment a mother came in with her daughter who had torticollis. Initially, I was shocked that a baby would be getting chiropractic treatment but the mother, who I later got to know pretty well, raved about the success of this and, personally, I rave about this chiropractor as well. She's Dr. Stephanie Maj at Community Chiropractic drmaj.net. Good luck to you!

My son was diagnosed with Torticollis (he wouldn't turn his head to the left) and (moderate to severe) Plagiocephaly at 2 months. We did physical therapy for about a year and he is fine now. He also wore a helmet from 8 months to 17 months, and his head looks great. We used Children's Memorial for physical therapy (Clark Street location), going weekly. We used Dr. Vicari and the STARband helmet (also through Children's), with Pat Rogel as our orthotist. Also wonderful. He has no tilt now and his head filled out on the flat side really nicely (not perfect but hardly noticeable). We did not go through EI, but our insurance (finally) covered everything after lots of appeals and advocacy for our child.

hello! my daughter had torticollis as well. She is 4 years old now with no sign of it anymore. we did physical therapy for about 6 months from the time she was about 8 months old to 14 months. the exercises they taught us in therapy really helped and i did them at home with her, too. eventually, it just kept getting better and went away sometime after about 15-16 months. hang in there.......she'll probably outgrow it. maybe you should try a new physical therapy office? are you happy with were you take her. maybe she needs a fresh approach from someone new? good luck!

Two of my children have had torticollis. The first was very mild and only received services for about a year. My son receives many services through EI and began at 3 months old due to the torticollis. It comes and goes, but especially comes back when they are focusing on a new milestone (crawling, walking, talking). We have done kinesotape (spelling?)which is taping the area to help get them to recongize to use that muscle, the "TOT" collar, and tons of stretching throughout the day, especially after baths when their muscles are looser. I know peds don't agree with chiropractors, but we have a family friend who is one and brought our son to him and believe it or not, there was a dramatic change!!!!! No one could believe it! We have lots of expereince with EI, but I am not quite sure what your specific question was about. Have you been told that the tort and eyesight issues are related? It is an emotional struggle when your precious child is going through anything such as this. I know you will get the answers you need and get through this.

Hi M.,

Sorry to hear about your baby's condition. As an adult,I to have this condition and I know exactly how this feels. I hope that what I have to say to you gives you some encouragement. I have had this condition now for 7 years and have been from doctor to doctor, have had physical therapy, you name it I have done it. The ONLY thing that I have found to help and give me some relief are the Botox shots. I have been going to Rush Hospital and see this Fabulous Nurologist, Dr. Cynthia Comela, she is also heavily involved with the Dystonia Medical Research Foundation of Chicago, where they are doing heavy research on this type of disorder. I strongly encourage you to contact them at ###-###-####, maybe they can give you information that you do not already have.

This condition Torticollis, only effects about 100,000 people in the whole North America, they are learning more and more about this and are working diligently on finding a cure, if you would like to talk in more detail, please feel free to contact anytime.

God Bless
C. S.

M., I myself am totally blind, a mom of two adult sons, but more importantly am an instructor at the Hadley School for the Blind
hadley.edu
which has a number of courses, mostly free and all done by mail or email, which could teach you a lot about dealing with vision problems of your child. Also, the Chicago Lighthouse has a zero to three program, I understand. You are welcome to call mary Zaabelski there at ###-###-#### and by all means tell her that I suggested you call. I have been in the "blindness business" professionally for over 30 years. And finally if you still have trouble, email me at
____@____.com
Good luck.

Hi M.,
My son had a pretty rough birth that took a long time. He developed a big hematoma on his head after birth, and definitely had a tilt to his right side. We started seeing a pediatric chiropractor when he was 4 weeks old, and now, at 7 months, he is doing great. We still see the chiro once a week, but he no longer holds his head to one side and he is doing exceptionally well. He started sitting up early, and has great posture!

If you want the name of my dr, just let me know. I can't say enough great things about him! He's in Oak Park.

T.

Greetings!! I can't remember the name of the condition but there is a vision disorder where the eyes are misaligned and the child experiences double vision unless their head is tilted to the side. The torticolis head tilt is the child's way of compensating for the vision problems. Have you investigated this as a possible cause? A friend of mine has a son that recieved physical therapy for torticolis until they took him to an opthomologist and discovered the eye problem. She said the doctor covered the misaligned eye and he straightened his head almost instantly. She was shocked! Anyway your case sounds a lot like her situation. She said a simple surgery to tighten a muscle in the eye (not sure of the specific medical details)solved the problem. He is now a normal 4 year old, no head tilt at all. It definitly might be worth looking into or at least asking your doctor about!

I have a friend whose daughter had torticollis and who is doing wonderfully now. She never needed a helmet. From what she told me of her daughter's treatment, just having therapy won't solve the problem. It has to be the right kind of therapy, and there are a number of places which treat torticollis that don't do the correct kind. They went to Children's Memorial Hospital Rehabilitative Services ###-###-#### and saw Katie Rule. There was also a support group that they went to for some time which they found helpful.

M.-
As a family chiropractor I have had great success with this. To find a family/pediatric chiropractor near you go to www.icpa4kids.org. Chiropractic will help balance your daughter's spine and neck so she will have great symmetry. This will not interfere with her PT, but acutally help what you are already doing be a bit more effective.
J.

I haev had my now 10 mth dtr seeing PT at Childrens Memorial PT since she was 6 weeks old and have seen amazing improvment. She is crawling and close to walking! The tilt is slight but her once known HUGE bump was gone after 2 mth treamtent. I did see a head specialist for a possible helmet since plagiocephaly is common. She eneed not needed one but did get a neck collar to avoid tilt. There are several excises to work at. Good luck!

I work in the medical field and would suggest, if you haven't already, see a pediatric ophthalmologist. Just to make sure that there are no other issues (amblyopia). With her head at a tilt the eyes are not being trained properly. Just a suggestion. Good Luck!