Shoot me an e-mail...I can tell you pretty much anything that you need to know! We went through all the steps, and K's case was so severe that we ended up having to go forth w/the surgery. We discovered her tilt right away, and began physical therapy 2x/week immediately. We also did the exercises to her neck daily inbetween her appointments. When that didn't improve her much after about a month and a half, we headed to Children's Hospital in DC. They have a wonderful torticollis clinic there and an awesome PT department. They worked with us to show us more 'hardcore' exercises since K was getting stronger and fighting us with the regular exercises that the local therapist had shown us. We continued to follow up with them, and K went through a series of head braces that were to assist in getting rid of the tilt. They did help, but even though the tilt was improving, she still wasn't able to turn her head to the left. Next step was botox injections in her neck and back directly into the affected muscle. The botox weakened the muscle for a period of 12 weeks so that we could work the muscle harder during therapy and she wouldn't be able to fight back like she generally did. After the 10th week there was really no difference, so we were sent to a sugeon for a consultation. Now, keep in mind that most all cases are easily fixed with persistent PT (both by a professional on a regular basis and at home daily by parents/caregivers). He said that K's case was pretty severe, and recommended her for surgery right away. She had the surgery when she was 10 months old - just last April. It went great, and her scar is already not noticeable. The only lasting symptom that she has is that her left eye (her tilt was to the left) doesn't open quite as much as her right eye. Some children actually have it way worse to where the whole side of their face is affected b/c of the lack of use of muscles on that side - so with K only having the eye issue we got pretty lucky since her case was so severe. At any rate, her eye should catch up with the other one by age 3, and she's 22 months now. If she's 2 1/2 and I don't see a huge difference, I'm going to take her back to Children's to have them take a peek and make sure she's on track. It's not even all that noticeable, but we notice it more of course b/c we're very aware.
But yes, at any rate, try not to worry! Physical therapy pretty much fixes most all cases of the problem, and there's no need to take it a step further. If that doesn't improve the babe within a couple of months, I'd highly recommend making an appointment at Children's for the torticollis clinic that they have weekly. The people there are absolutely great, and very knowledgeable.
