Mateo's Diagnosis

Okay, so Mat has moderate to severe Plagiocephalys with Congenital Muscular Torticollis (CMT). In plain English, his skull bones didn't form correctly in utero and neither did his neck muscles. The muscles are short and tight. So they did measurements and pictures today to determine the symmetry (or lack thereof) of his head and face. Normal asymmetry is roughly 2 mm difference between the left and right side of the body when comparing same points. Mateo's were at least double the difference in all areas except for the cheekbone to ear measurement - that one was a whopping 10mm difference. So this is what is making his ears uneven, one eye seem smaller, one side of head sloped, and his forehead protrude just a smidge.

So yeah, as soon as insurance gives the okay (should be within a couple days - and we're told that our insurance is one of the best to work with - especially given his extreme measurements - so that's a relief), we will proceed with getting him fitted for a DOC (Dynamic Orthotic Cranioplasty) band. **Edited to say that we found out that insurance will cover 90%!! Yay!** He has to get a casting of his entire head (sans mouth), which sucks because they have to put plaster all over him - including his eyes - for about 10 to 15 minutes. Then within one to two weeks he has his first fitting and begins to wear the band for 23 hours a day every day. Plus we continue to do physical therapy ourselves with him, and our physical therapist will come visit once or twice a week. We also will have weekly visits to the orthotist. To the right is a photo of a kid wearing a DOC band (not our kid, of course).

The good news is that he's young enough that they think it *could* take only 6-8 weeks of wearing the band. However, if he has a large growth spurt (which they think is possible), he'll have to have another casting done and get another band. This would obviously bring his time wearing the band to another month or two. So I'm expecting 5 months of wear just to prepare myself. I got to hold the band and see that it is indeed very light and shouldn't weigh him down too much. After the band part is finished, we will still have to continue therapy to deal with the CMT. And I suppose the other good news is that we can decorate his band (I'm trying SO hard not to call it a helmet!! haha) with stickers and fun stuff every week or so. :-)

On the downside, summer is a brutal time to wear a band, so no swimming and getting hot and sweaty. It'll be an indoor summer this year. Booo!! But it'll all be worth it to get this taken care of.
To see some photos of other kids with his condition, you can check out this link: http://www.cranialtech.com/ This is the place that we use.