Friday, December 5, 2008

Torticollis and Plagiocephaly

Warning: This post may be lengthy.
At Grace's 4 month check-up our pediatrician told us that Grace has a muscle disorder called torticollis. Basically, while she was developing in-utero the muscles on the right side of her neck formed too tight which caused her head to always be turned to the right. Since a newborns skull is so pliable she developed plagiocephaly from always having her head turned to the right while lying in the bassinet, bouncer, swing, car seat, etc. Plagiocephaly is the flattening of one side of the back of the head. The back right side of Grace's head is significantly flatter than the other side. Once we learned of the torticollis we were referred to a physical therapist. That in itself was a nightmare. We spent 3 whole months trying to find a physical therapist in our area that was in our insurance network AND that practiced pediatric physical therapy. Apparently, when doctor's run your insurance and find out that they're out of your network, they don't bother to let anyone know. They just leave you hanging until you get impatient enough to hound them about it. Then they act as though you should've known somehow that they were out-of-network. Arrrgh. Finally, in August Grace began PT for the torticollis and has been going regularly ever since. She's doing very well and has about 95% range of motion in her neck to the left and 100% to the right. She will probably stop PT once she begins walking (hopefully by the time we return from Utah for Christmas). Getting started on treating the plagiocephaly was also pretty difficult. We were told that the physical therapist had to make the referral to the pediatrician, and then the pediatrician would write the "prescription" for an evaluation by a specialist at a place called Cranial Technologies. We were told over and over again that the PT would take care of everything. Yeah, right. At Grace's 9 month check up I asked the pediatrician about the referral from the physical therapist and they never received one. We had been waiting 2 months and nothing was ever sent even though every week at the PT appointment I was told she was taking care of it. My pediatrician is totally awesome (she has a 7 year old daughter who was diagnosed with torticollis and plagiocephaly when she was an infant) and went ahead with the "prescription" to Cranial Tech and we had an appointment set up a week later. Our evaluation went well. Grace's head is asymmetrical by 22mm. I guess that's kind of a lot because her treatment is going to be pretty long. After our insurance gave Cranial Tech their approval we had to take Grace in for some computer scans of her head so they could make a model of it in order to manufacture a helmet just for her to correct the flatness. Well, yesterday was the helmet day. She was fitted for it and officially began treatment. It was kind of emotional for me, but didn't seem to bother Grace at all. She tried to pull on it a couple of times, but other than that it was no big deal. Much to my surprise she got a great night's sleep with it on. She's definitely a trooper. She'll wear this helmet for about 3 months and then be evaluated again. There's a pretty good chance she'll have to have another one made and will wear it for another 3 months. We're hoping that she hits a growth spurt and it all gets corrected in the first treatment. The worst part is that I have to drive to Dallas every other week for her check-ups. Luckily gas prices have dropped so much or I wouldn't be able to afford to drive the 125 miles each way.

Grace getting ready for her scans. She tried to eat the stocking the whole time. At least she wasn't crying.

This is during the scans. There were 5 cameras taking pictures from all angles.

Just after being fitted for her helmet.

Just before going to bed. Trying to figure out what's on her head.