Another Setback

On Monday I took Easton to Mary Free Bed to be evaluated by their torticollis expert. He has been in physical therapy for nearly 7 months now and we thought he would have made more progress by now (actually we thought he would be done with PT) so our pediatrician sent us to see Dr Maples at MFB. She poked, prodded, and examined his entire body and then sent us for some x-rays. First, she wanted to check his hips - 10% of torticollis patients have hip dysplasia - and they looked perfect. Then they took 4 different views of his neck (it was not fun holding my baby down for all of those) to see if there was anything structurally wrong with it. Even though the x-rays don't show absolutely everything (that would require a CT scan) Dr. Maples said she is certain he does not need surgery to correct the torticollis, nor does she believe he needs further scans to confirm that. So that was wonderful news! Then I asked her if we should continue to go to our current physical therapist or if we should start coming to MFB for therapy. Remember - we tried to get into MFB initially but they couldn't schedule us for 6 weeks so our pediatrician told us we should go to the Center for Physical Rehabilitation instead. She thought it would be worth at least second opinion to see what the therapists at MFB thought of his progress.

So on Wednesday buddy and I went back to MFB for a torticollis evaluation. The therapist, Janna, took a lot of time just watching Easton move around. With just about everything he did she made a comment about how he is trying to adjust his movements because of his left head tilt. For example, when he pulls himself up to stand he ALWAYS props his right leg up first to balance himself b/c of his neck. She held his right leg down and had him try to get up and he could but it was way more difficult and boy did it tick him off. Then she pointed out that when he sits down to play he shifts his weight to the right side to counteract the neck. So she kept moving his legs so that he had to sit symmetrically instead. There were a lot of things she found that I had no idea about. Our other therapist NEVER looked at any of these things. Everytime we saw her all she did was stretch his neck, like we do at home, and then sent us on our way. Janna said that we not only need to stretch and strengthen his left neck muscles but we also need to work on his entire left side. Janna sent me home with some "homework" - like trying to get him to stand up leading with his left leg. The activities we have tried so far have made Easton very mad. He has already established his habits with sitting and standing so it is going to be difficult to break him of those. I asked Janna how long children are in therapy at MFB and she said that if they get them as infants they are usually in and out in 12 weeks - not 7 months!!!!!!! Needless to say I was devastated when I left there. I thought I was doing what was best for my child by getting him into therapy ASAP. Had I known there was going to be such a huge difference in the care he received I would have waited. I feel like my pediatrician let us down. He should have known what the therapy programs were like at both places and should have informed me of the differences. It sounds like he could have been done with therapy months ago had we gone to MFB right way. Now Easton is scheduled for 1 hour, weekly appointments with Janna for the next 12 weeks. I thought the end was in sight but poor Easton has a lot more work ahead of him and I feel like it's all my fault.