Hi S.,
I have twin boys who are just a year older than Anders, and the lower twin, Devin, had severe torticollis and plageocephaly (the mis-shaped head). He was diagnosed at 4 months (the usual age for diagnosis) and really, the earlier you go the better. He is still being treated for it at 14 months. You do an eval, and then we have therapy once every 2 weeks for a half hour. Every 3-4 months you go back to the specialist to see how things are going. Usual treatment lasts 6-9 months, I think. You also get a series of exercises that you have to do at home, usually 3 x's/day. I don't know if this will be the case with your son, but with Devin, the older he got, the more resistant he became to stretches and exercises. It was also very difficult for us to always do the stretches 3 x's/day and we have no idea if our home daycare lady was doing the stretches like we asked (she said she did, you just never know).
Torticollis is very common with babies who sat low - and almost guaranteed with multiples. You do have to do the work if you want it to go away. We expect Devin to be released from treatment next month, but it's been a long road with threats of surgery. Now he is finally shaking his head back and forth, and twisting his torso, something his twin brother was doing months ago. Plus his shoulders are even when you look at him now.
About the helmet. I disagree with the previous post. The doc who does the initial eval will let you know if he/she thinks your son needs a helmet. If it's recommended, I suggest getting it. With our initial eval, we were told the same thing about it being optional, how it won't effect the treatment for torticollis, how it's expensive and there are lots of appointments, so we decided not to do it.
Well, by the time Devin was 9 months old and going in for his recheck, his neck was getting better, but because his head was mis-shaped, it still rolled to the flat side and he would sleep with it on the flat side. Let me tell you, 9 months old is not the best time to get the helmet. The best time is early, when their heads grow rapidly and you don't need it very long. We finally did get the helmet for Devin last June, and thankfully his head is evening out and is also expected to be discontinued next month. His helmet appointments are right after his physical therapy appointments, so it's not like we are making extra trips to the doctor for it. For us, the helmet made a huge difference. Also, the cap and his appointments are covered with medical assistance, so I think it's something that insurance companies are willing to pay for if the state is willing to pay for it. The state doesn't pay for circumcisions anymore, so I think they must have seen the benefits of getting a helmet if they are going to cover it.
Good luck! I know it's scary at first but things should turn out smoothly. Your son is lucky to get a diagnosis so early.