May-July 2002- DOCband #1

Two weeks later we picked up Hannah's DOCband helmet. The first couple days were a little rough for Hannah because she was sweating alot and having trouble sleeping, but I think they were actually worse for me! Within a couple days she was back to normal though, and I had decorated her helmet and made it a little more attractive. I was amazed at how great the band fit right from the beginning. It was a little low at first, but after Lynne (our CT clinician) adjusted it a little it was perfect! Here she is at Cranial Tech before that adjustment and then the following day:
When we started venturing out of the house the fun really started. In addition to all the stares and looks of pity, we got everything from "Did your mother drop you on your head?" to "You must be really overprotective," to "Wow, I've never seen a seizure helmet like that before!" Some days the stares and comments really bothered me, but I tried to make the most of it by using it as an opportunity to educate others about plagio. What made it all worth it though was seeing the progress first hand, and it was noticeably better after only a couple weeks. Here is her 3 week progress picture (this is one you'll definitely want to click to enlarge!):

With her being so young (only 4.5 mos when she received her band) she only fit in that first band for about 10 weeks. Her asymmetry had improved from 20mm to 10mm during that time, and CT recommended a second band for Hannah. With the drastic and very encouraging improvement we were seeing, we decided we wanted to go for the second band. Anticipating her soon growing out of that first band, we had made an appointment at the neurosurgery clinic (we were supposed to see Dr. Proctor, but ended up with Dr. Smith), and he said that he'd like to see Hannah banded for another month and then she should be within the normal measurement range, but if we'd like to go for the second band we could call for the prescription. We learned the following week that she had grown out of the band though, so we called to ask for the prescription for the second band. They said they'd fax it, but while we were on the way to the casting appointment Dr. Madsen called and said he didn't feel the second band was necessary, despite her still having 10mm of asymmetry! We turned around and felt this may be a sign to forget about the second band. I ended up calling our pediatrician though, and she surprisingly wrote the prescription for us. The next week on the way to the casting we were caught in the traffic of the highway being closed because of a bad car accident and again had to turn around and go home! We were getting very discouraged and then had an additional delay with BCBS again!

  BCBS kept "losing" our claim and kept requesting it to be re-faxed, etc. We knew we had to get an answer on the first band before they'd give us an answer on the second one, so I began to make some calls. I contacted our local newspaper after learning of a press release that the American Academy of Pediatrics would be releasing on the link between the Back to Sleep Campaign and the increase in cases of Plagio. They agreed to run a story on Hannah in conjunction with an article on the press release. To our surprise Hannah's Story ran on the front page! One of our local Boston news stations had also seen the article and offered to make some calls for us. In addition, my husband's employer (who our insurance was through) saw the article and made some calls. We found out within 24 hours that the band would be covered, and the funny part is that we received our official denial in the mail only a day later! Goes to show you what a little media attention can do! It was covered 100% because of the media, but would have been denied completely! With the second band we were again denied, but they ended up covering it as a continuation of treatment (and that just took one phone call, no appeal necessary!).