Torticollis Update

Thank you to everyone who sent me messages privately about your experience with torticollis or someone you know who had torticollis. It was encouraging to me to know that others were or had experienced the same. Also to hear of those who had emerged from the other side unscathed. 

J is almost 12 weeks now. She is able to lay at midline longer now without twisting her neck. When I lay her in bassinet at night sometimes she will stay at midline for a long stretch, but then when she is really tired she will twist her neck so that she lies on the left side of her head. It is the same if I am holding her or propping her up to sit. She has the strength to hold level for short stretches but then it will default tilt. She has improved with her ability to turn her head to her right. 

Yesterday we went to Saskatoon to see a physical therapist that specializes in torticollis. It was relatively easy and quick to get an appointment. She was a natural with getting J into the stretches and showed us a few new stretches. I would have liked to have made a video as already I'm wondering if I remember. I wish we lived closer to see her on a more regular basis even if it was $95 for one session. L wasn't convinced it was worth it since J stiffens up in the car seat and he thought it was a waste of time to go that far when we can see a local therapist. I was glad to have a second opinion and to learn more or to have someone new to talk to about it. When your in the trenches it is nice to have someone who understands. I am continually holding, positioning and repositioning J and sometimes it is exhausting.  I would pay $95 a month just for the encouragement. I felt a little mom guilt when I admitted this to myself --that perhaps the appointment was as much for me as I said it was for her.  L is correct that I shouldn't have her in the car seat for a two hour stretch. That aside I did feel encouraged after as she reminded me to not compare J against other babies at a similar age. This is so easy to do and I get really concerned sometimes especially when I go to the weekly weigh ins for baby and the nurse makes comments about how J is delayed or has asymmetries and then I notice that some of the new friends I have made have babies that are sitting up, able to sustain tummy time for long periods, or jumping in jolly jumpers. She reassured us that even if we did nothing it would resolve, but that everything we did was just helping to resolve faster. She would like to continue to see J on a monthly basis but with the long drive I may wait until J has progressed to holding her head on her own and/or sitting. Any time I know I am going to be in Saskatoon she said I could call the week before and schedule an appointment. 

I realize our local PT recommended many of the same stretches. My last session with her was much better than the tummy time video session. And L is right that we are her best therapists by doing the stretches at home. It's hard to be consistent and stretch following each bottle or tummy time after each diaper change. I'm lucky if I can fit 3 sessions of tummy time in during a day sometimes and 4 stretching sessions. We've seen some progress with Js mobility from doing the home stretches recommended by our local PT. The wait between appointments with our local PT is so long. Currently I have been waiting two weeks for her to call back to schedule our next appointment in six weeks. 

J did develop a flat spot on her left side of her head and we could feel the plates overlapping in her head but with side sleeping during her naps on the opposite side during the day we have been able to resolve this almost entirely. Yay! That was a big concern of mine. It is amazing how malleable a babies head is.