10 answers

Torticollis and Vision Concerns

Since my daughter was just a few months old, we noticed that her head tilted slightly to the right and her chin pointed to the left. Although we attempted to have this addressed on several occasions, we were told there was nothing wrong. Finally, at 14 month after some persistence the pediatrician checked her again and determined that she has Torticollis. Treatment became urgent as we missed some of the most important months to correct her condition. We were referred for PT. Unfortunately; there is ONE in my area that works with children with her condition. When we got to PT I was told that she really doesn’t have a lot of experience with her condition. I was given printouts and told to come back whenever I thought I needed to. Most of the work was done at home. I now have a very strong willed 22 month old and I am getting very discouraged. Her neck is still not corrected despite my attempts. I stretch her neck and arms daily, I address her from the right side, we play game to strengthen her stomach, arms and back. Recently I have notice a new problem with her eyes. When she tilts to the right her eyes are fine, when she tilts to the left her right eye seems to disappear behind the bottom lid. The range of motion in her neck is fine as well as the ROM in her eyes. My concern now is not only her neck but her eyes. Occasionally her eyes will cross, her left eye moves faster than the right and it seems that her right eye is fixed when she tilts the other directions. What do I do now? I have taken her to two different dr eye and family practice and they are both saying she is fine. She has full ROM and it does not appear to be neurological. Problem… what is going to happen to her long term? What happens when her neck is corrected and her head is straight but her eyes aren’t? Has anyone had a similar problem? Recommendations?

What can I do next?

Featured Answers

While my son doesn't have this specific challenge, he has other things that has caused us to work with various specialists. I agree with the other moms that you should contact someplace like LPCH. We used their Developmental-Behavioral Pediatrics Group http://www.lpch.org/clinicalSpecialtiesServices/COE/Mothe...
Also we have used Starfish Therapies for some PT, so you may try there? Seems like they offer a lot of services. Good luck.

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Try contacting the medical center at Stanford. When my daughter had her cataract surgery at 3 we went to Duke. These colleges are the best in the country and teach students to treat these kinds of conditions under very experienced eyes.
What about University of Ca, maybe in Berkeley.

I would suggest getting a second opinion! Preferably from a pediatric opthamologist and a pediatrician. It sounds like nobody has looked into the reason why she has the tortacolis. You are her only advocate so keep persevering! Good luck!

There are questions that may make a difference in mentioning when seeking a second opinion. Does your daughter always tilt her head to the right or the left? If she always favors a set head position that makes a difference to. It's wise to get a second opinion as you already have a gut feeling something is wrong. There is a Pediatric Clinic that specializes not only in Pediatrics but Strabismus (Eye Turns) at UC Berkeley School of Optometry on the campus. Exams can take a while but they are very good with kids and have all of the diagnostic equipment to boot. I believe their telephone number is ###-###-####. The sooner you discover you find the reason behind all the behaviors and difficulties, the better. Whether there is a congenital, mechanical, or functional problem, it's best to work on a diagnosis so you can better help her. Best of luck.

The two eye doctors you took her to are they pediatric eye doctors? I think you need to take her to a pediatrician and pediatric eye doctor. You might want to have her seen at a Children's Hospital - Lucile Packard Children's Hospital, Oakland Children's Hospital, or UCSF. They all have very good pediatric specialists.

I agree w/the other responses.....get a second opinion & preferably from some form of a specialist. Do your own investigating as well & come armed w/questions. Clearly you know there is something that is not right & you need to be insistent w/the doctors you take her to see. As parents, we are our children's strongest advocates so be prepared to stand up for what you know your daughter needs. Best of luck!

I don't share your problem, however I would recommend you see a Pediatric Opthalmalogist for your daughters eyes. I wouldn't settle for a general as often times they do not have enough knowledge on pediatrics and the eyes of children. I was born and operated on for strabismus (crossed eyes), I still see a ped opth. to this day because general opthalm. don't have the insight on my problem. I notice you live in Modesto. There are a couple of specialists in Sacramento and possibly one in Stockton, but if I were you I'd head to SF for the best and most up to date care. Either CA Pacific Med (Dr. Day or Dr. Good) or UCSF. Both have excellent doctors, probably some of the best on the west coast. Good luck.

While my son doesn't have this specific challenge, he has other things that has caused us to work with various specialists. I agree with the other moms that you should contact someplace like LPCH. We used their Developmental-Behavioral Pediatrics Group http://www.lpch.org/clinicalSpecialtiesServices/COE/Mothe...
Also we have used Starfish Therapies for some PT, so you may try there? Seems like they offer a lot of services. Good luck.

I have heard of babies with torticollis but I don't know about it effecting vision. If I were you I would take her to another eye doctor for a second opinion. Just to double check on her eyes. When I was a baby I had a lazy eye but the doctor told her it wasn't too bad and it will get stronger as I got older. It did and was fine by the time I was 3. My eyes are totally fine and straight now. So she could just have something miner like that. But I really would get another doctor to look at her. Sometimes they really don't know the answers to everything. My kids had a skin rash once and about 4 doctors later I finally found a cure and was told what they had. So sometimes you have to keep trying until you get the care you need.

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