March 2002- Internet Bliss & Specialist Visit

The sleep positioner was a crock, I was a repositioning failure, Hannah's head was getting worse, and I was getting stressed. I saw in my One Step Ahead catalog the Head 'n Back sleep positioner that used memory foam and claimed to relieve the pressure that can lead to "plagio." This was the first time I had ever seen or heard that word.

I got right online and looked up "flat head" and "plagio" and immediately was flooded with images of heads that looked just like my daughter's, though many of them not as bad. It was this night that I found the Yahoo Positional Plagiocephaly Support Group, and the answers to all my questions. I spent the night reading through the extensive files and links sections and some posts from parents. The next day I took some pictures of Hannah's head and posted them for opinions.

The amazing parents on this site urged me not to wait until she was older, as early treatment is key, especially where Hannah appeared to be severe. I called my pediatrician the next day and demanded a referral to see a specialist. Our pediatrician also ordered xrays to rule out premature fusing of Hannah's sutures (Craniosynostosis, a more serious condition requiring surgery). Thankfully the xrays came back fine and we were on our way to see Dr. Joseph Madsen at Children's Hospital in Boston the following week.

Dr. Madsen diagnosed Hannah with the worst case of plagiocephaly he'd ever seen and wrote us a prescription for a molding helmet. He sent us downstairs to NOPCO, a brace shop located in the hospital, where we waited for a couple hours to talk to one of the orthotists. I learned they were in their first week of using a STARband modified to be passive, rather than their own custom band that they had used in the past. They told me Hannah was too young to be banded and wouldn't consider it until she was five months old. I also looked into Hanger in Massachusetts and Cranial Technologies in Clinton, Connecticut.

We were told by all three of these places that our insurance, BCBS of Massachusetts, would deny us coverage for the helmets. From knowledge gained on the Yahoo Plagio Group, I knew that the most important thing to look for was an experienced orthotist. I didn't trust my abilities to properly interview these orthotists, and therefore we decided to go with Cranial Tech, as all their orthotists are required to be specially trained in cranial remolding with their DOCband helmet.

I called Cranial Tech, faxed them our prescription and letter of medical necessity from Dr. Madsen, and they forwarded it all over to BCBS for the required precert.

Comments

[Tara]

I just found your website that I bookmarked about 2 months ago. My son just got his helmet today and I am looking at your pictures and feel like I am looking at my baby boys head. We got ours from NOPCO as well and am concerned about his fitting. Is there anything else I should look for besides the redness. It is only his first week, and I am a bit discouraged. He was in it only 4 hours (not at once of course)and he sweats in it horribly. It is not even summer yet. Any tips to keep him cool besides central a/c, which I am fortunate enough to have....please reply. I am desperate for info....

[Kim]

My daughter is 6 months old and has been in her band for 5 weeks. There is no help for the smell......I clean it with rubbing alcohol and put it in front of a fan. We have even tried putting it in the sun, but it still smells. She sweats with out it and is just a hot natured baby, so you could imagine how much she sweats in it.

Kim