So Ryan and I have always been a little concerned about Little Sisters' head shape even just a few days old in the NICU. The nurses at discharge didn’t say it was concerning and thought that it would round out as she got older. We brought it up to our Pediatrician in Carrollton and he said the same thing. Although Ryan and I were still concerned we were okay with waiting a little while since she still had a bald spot in the back of her head (meaning she was putting pressure there) and because we were doing are best to position her head straight forward rather than on either side. She always had a preference for dropping her head to one side or the other though and eventually she learned to wiggle around and move the pillows. Now that she is sitting and/or on her belly exclusively she is not putting pressure on the back of her skull anymore. With this said we started noticing her head shape more and more each week. With our concerns growing I asked the pediatrician in Lubbock who agreed that it was not perfect but she still recommended to wait a few more months to see if it would round out on its own.
Well for the last few weeks I spent hours on the computer googleing information and on the phone with people I knew who have children with similar situations or who work in this field. The overwhelming majority of the therapist in Lubbock recommended that I go to Dallas if I was really concerned. The more I read the more I realized that we shouldn’t wait any longer as treatment is best before one year of age. With that I decided to see if we could get an appointment with a company called CRANIAL TECHNOLOGIES in Dallas for the weekend I was planning on coming already to see friends. Luckly they had an opening yesterday for an evaluation.
I could not have been happier that I came! They took all sorts of measurements and took several photographs from different angles. Then they took more in depth pictures of Little sis’ head that were all used to composite a 3-D image of her skull (with out all her crazy hair). When the OT came in to do the assessment she said all the same things that our OT and PT in Lubbock have said and are working on (YEA!!!! Go ECI thearpists!!). When the evaluation was all said and done it turns out that Ryan and I’s suspicions were correct. Little sis has a moderate to severe case of Plagiocephaly and Scaphocephaly which means that her skull bones are asymmetrical, that one side is flatter than the other, and that her skull is growing too prominently at her forehead and in the back of her skull. There was a ton more that we learned at the eval, but for the most part that is the gist of it. As for treatment, the clinic that we went to uses DOC bands exclusively. This is a helmet made of foam that is custom made to fit each child's head individually so that as they grow their skull has only certain places it can grow. It was projected that Little Sis would need to wear a band for 3-4 months . When we asked the clinician what would happen if we didn’t treat she said that Little Sis’ bones would start to harden about 18 months of age and the sutures in the skull would close about that time then too. So whatever her head shape is at that point would be what her adult skull shape would be, but just larger. With that we chose to move forward and begin treatment immediately.
Friday, they sent off the 3-D rendering to the DOC band company to have Little sis’ helmet made. It should be ready for her first fitting in 10 days so we will come back to Dallas then. Once we are home little Sis will wear her helmet 23 hours a day 7 days a week. She is only allowed to take it off for bath. Then every week to two we will come back to Dallas for check-ups and to have the inside of the helmet adjusted so that Little Sis’ head can keep growing the right direction. This will continue for 4 months or until her head shape is adequate.
Well I know this is a lot of information butI highly encourage you to go to the cranial tech website and read more about diagnosis, evaluations, and treatments. Also there are some amazing before and after photos that will just shock you.
http://www.cranialtech.com/
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