The Diagnosis

By the end of month two we were starting to get worried about his head shape. I began trying to keep him off his flat spot when sleeping. We bought every kind of wedge and pillow made, but short of putting cinder blocks in his crib, nothing kept Dominick from his favorite position, flat on his back on the flat spot. It seemed like he was getting worse every week. At three months I began to notice the head control we were so amazed with early on was disappearing. He was barely able to turn his head to the right and preferred to keep it turned to the left over his shoulder. It was just the same way he slept every night. It was becoming a rare occasion if we found something interesting enough to make him look forward.. I remember looking at the Christmas picture and thinking ,"what a cute pose with his head tilted" only to find out that was how his head sat because he just couldn't hold it any other way looking forward. By the time he was approaching four months I was beside myself with worry. He had started to roll over and that had stopped, he seemed so weak on the left side of his body and his head was getting so bad. We kept saying to each other that something was off about his face, and his forehead looked as if it was pushing out on the left side. At first I kept saying that we had all his well checks, surely if there was something wrong it would have been picked up by now, but then my "Mommy Instinct" kicked in strong.

I began my search for answers on the internet. I went to the American Academy of Pediatrics (AAP) website and typed in,"Why is my baby's head flat?". There it was; PLAGIOCEPHALY. An abnormal head shape caused by inutero constraint, back sleeping, too much time in a carseat, or bouncy seat. BACK SLEEPING, wait a minute aren't these the same people who told me to sleep him on his back? OK, Now I'm mad!! How come no one told me this was a risk ?  I left that hospital with bookmarks, stickers and a stack of papers all saying "Back To Sleep" on them, but nothing that said plagiocephaly was a risk. I brought up the pictures they had and started to cry. Why hadn't anyone told me?  I began reading what little info. was available on the AAP site, and they spoke of banding treatment. Then it hit me, my sister in law's little boy wore a band for about 4 months to correct the shape of his head. I grabbed the phone  and that is how I came to find Cranial Technologies.

                                   The Cranial Technologies website was a wealth of information. I absorbed everything. I used the assessment charts to check his severity, he came up severe, I kind of knew that. His head by this time looked like someone had put a bicycle helmet on him sideways. I read about the Doc Band treatment and thought it was worth looking into, but me being the ever skeptical person I am, decided I was going to research all my options. I found out there were bands called Star Bands, Hanger Bands, and a few made by doctors themselves. I researched most of the other providers and found just basic information, mostly repeating what the AAP site had said. I decided to go more in depth and  I looked up all the research studies I could find on the subject. It seemed that nearly every study on the diagnosis and treatment of plagiocephaly came back to the team from Cranial Technologies. I read that the Doc Band was the first to gain FDA approval and because of that, they had to be able to provide the studies that backed up everything they said thier treatment could provide. I wanted a provider that would continue the studies, because I feared what this would do to him down the road. Well my choice was made, the only one who fit my criteria to treat my baby was Cranial Technologies. I called  to see what I needed to do to set up his evaluation and found out I needed a prescription if he was to get treatment. I gave them all the insurance information ahead of time and we set a date. I called my pediatrician's office the next day for an appointment to get the prescription.

While I waited for the big day to come when I would finally have some answers I went to my pediatrician. Learning from the parent board on the CT website that doctors can sometimes be uneducated or against banding I went to her office prepared to fight. I copied everything from the CT website including the assessment charts, I had copies of studies and anything I thought might help me explain or demand treatment and a prescription. It was my pleasant suprise that when I walked in and showed my ped. everything I had and did the assessment charts with her, she was very much convinced he would benefit from treatment. She wrote me a prescription for treatment and did an extra check of his head to be satisfied he had no outward signs of craniosynostosis and most importantly to me gave me her full support. I thank you Dr. King.

On January 10th,2005 we went to Cranial Technologies in Annandale,Virginia for Dominick's evaluation. The first thing I noticed was that the office was very inviting and clean. This is important to me.  My husband and I met with Leslie who was very comforting and helpful. First she explained what plagiocephaly was and the possible risks that come with untreated plagio. Then we had pictures taken of Dominick's head and face from every angle by Tracy. They were great at doing things quickly so Dominick didn't get too fussy. Tracy took measurements for our insurance company and then Leslie came back in to discuss his case.We were told that Dominick had a pretty severe case of leftsided plagiocephaly.  In addition to his flatness he had facial asymmetry and ear asymmetry  both of which were pretty signifigant.  The good news was that he was a candidate for the band treatment and because of his age we should see pretty good correction. The casting and treatment processes were explained again and we were told we could go home and discuss it and then get back to them with our answer of go ahead or not. We didn't need any time to decide, we asked them to go ahead and start things moving. Cranial Tech. submitted our insurance claim and we now began the wait for insurance to grant precertification. While we had to stay on top of things, making phone calls to insurance and back to CT and then the peds office to keep things moving, we started things going to work on the muscle problems.

Comments

[Lizzy]

My son is 3 monthes today and I took him to his 3 rd office visit, I had notice his flat head but I recall my daughter having a flat head with lost of some hair arounf that area so I didnt think anything about it. but today his doctor tell me he needs a helmet to fix his flat head so I start looking for more information on the internet. And find that their is more to it then just a flat head. their are side affects to this how lng before it starts affecting his hearing and his eyes? Why dont they tell you about this befor you go home from the hospital just like they infoce you to lay them on there backs something need to be done someone needs to be held responsibal for the lack of informations