Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Hi Everyone! Our story is fairly typical in the plagiocephaly world. Luke was born with a very coned shaped head. His position in my uterus and a long labor were contributing factors. At his 2 month appointment, I brought up my concerns to his pediatrician because his head shape was still noticeably pointy and starting to flatten. I was told that it would round out within a year. At his 4 month appointment, I asked again and his pediatrician said that Luke had positional plagiocephaly and brachycephaly and that it would round out once he started sitting up. I went home and found this group and went back to the pediatrician to check for torticollis and to discuss further options. Luke did not have torticollis, but his pedi hesitated when I again asked if his head would fill out. I asked about banding and the pedi said that he never had a kid who had a helmet and that if it were his child, he wouldn't band. However, after calling and emailing him about banding for the entire next week, he admitted that Luke could benefit from a band. We went to Arimed in NYC and got fitted for a STARband when Luke was 5 months old on 4/7/09. Luke's CI was 97.5%, and asymmetry was 6.6mm. From the start, we had issues with the fit of Luke's STARband. It kept rotating to the left which caused it to fold over his right ear and pushed on his right eye when he slept. The ortho kept saying it was okay and that's how the helmet worked because Luke's head shape created the rotation. I agreed with this, but I didn't think it should rotate SO much. It was such a frustrating time working with an incompetent ortho who did not communicate well and who did not listen to my pleas for help. After repeatedly going back to get adjustments to no avail, we stopped treatment 2 months later on 6/10/09. Luke had a couple of great growth spurts and the STARscanner said his CI was down to 88% and asymmetry was 3mm. I thought it looked great. My husband agreed at first, but then started to voice concern about how it looked from the top view. 2.5 months after his STARband graduation, we went to Cranial Tech in Parmaus, NJ for a consultation. Their hand measurements had Luke's CI at 91% and his plagio asymmetry at 14mm!!! I don't know if it was regression or the first ortho REALLY didn't know what he was doing when he did Luke's scans, but we decided to go band Luke again, this time with a DOCband. Luke received his band on 9/2/09 and wore it until 12/7/09, graduating at 13 months old. His CI went down (again) to 88% and his asymmetry at 4mm. He looks amazing and I love having his little head back. I still see a little flat spot and his head may be a tad taller than most kids, but I know I am looking at it with a critical eye. Our BCBS PPO insurance paid for everything for Luke's STARband minus our deductible and 70% for the DOCband because CT was out of network. Going through the banding process was not the easiest thing in the world, however, I have no regrets and believe that everyone who has gone through this process, is presently going through this process or will be going through this process should be extremely proud of their strength and perseverance. It's a lot to grin and bear when your child has a plastic helmet on:) I'm so happy I found this group and I'm also thankful that it is extremely supportive. It's nice to be part of a community that sincerely tries to help one another. Luke, 14 months STARband 4/7-6/10/09 DOCband 9/2-12/7/09 NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 , Thanks for sharing your story! Luke is a handsome kid. We are putting the rest of those football decals to good use on 's band! I agree with what you said about this community being so supportive. A lot of people--including you!--who are done with the banding process still take a lot of time to come on the board and give advice and suggestions to people who are just beginning down this road. Your expertise are invaluable and I'm grateful to all of you who do this. Glad Luke's treatment turned out so well! Best, Mom to , 9 months old, DOC Band 12/29 > > Hi Everyone! Our story is fairly typical in the plagiocephaly world. Luke was born with a very coned shaped head. His position in my uterus and a long labor were contributing factors. At his 2 month appointment, I brought up my concerns to his pediatrician because his head shape was still noticeably pointy and starting to flatten. I was told that it would round out within a year. > > At his 4 month appointment, I asked again and his pediatrician said that Luke had positional plagiocephaly and brachycephaly and that it would round out once he started sitting up. I went home and found this group and went back to the pediatrician to check for torticollis and to discuss further options. > > Luke did not have torticollis, but his pedi hesitated when I again asked if his head would fill out. I asked about banding and the pedi said that he never had a kid who had a helmet and that if it were his child, he wouldn't band. However, after calling and emailing him about banding for the entire next week, he admitted that Luke could benefit from a band. > > We went to Arimed in NYC and got fitted for a STARband when Luke was 5 months old on 4/7/09. Luke's CI was 97.5%, and asymmetry was 6.6mm. From the start, we had issues with the fit of Luke's STARband. It kept rotating to the left which caused it to fold over his right ear and pushed on his right eye when he slept. The ortho kept saying it was okay and that's how the helmet worked because Luke's head shape created the rotation. I agreed with this, but I didn't think it should rotate SO much. It was such a frustrating time working with an incompetent ortho who did not communicate well and who did not listen to my pleas for help. > > After repeatedly going back to get adjustments to no avail, we stopped treatment 2 months later on 6/10/09. Luke had a couple of great growth spurts and the STARscanner said his CI was down to 88% and asymmetry was 3mm. I thought it looked great. My husband agreed at first, but then started to voice concern about how it looked from the top view. > > 2.5 months after his STARband graduation, we went to Cranial Tech in Parmaus, NJ for a consultation. Their hand measurements had Luke's CI at 91% and his plagio asymmetry at 14mm!!! I don't know if it was regression or the first ortho REALLY didn't know what he was doing when he did Luke's scans, but we decided to go band Luke again, this time with a DOCband. > > Luke received his band on 9/2/09 and wore it until 12/7/09, graduating at 13 months old. His CI went down (again) to 88% and his asymmetry at 4mm. He looks amazing and I love having his little head back. I still see a little flat spot and his head may be a tad taller than most kids, but I know I am looking at it with a critical eye. > > Our BCBS PPO insurance paid for everything for Luke's STARband minus our deductible and 70% for the DOCband because CT was out of network. > > Going through the banding process was not the easiest thing in the world, however, I have no regrets and believe that everyone who has gone through this process, is presently going through this process or will be going through this process should be extremely proud of their strength and perseverance. It's a lot to grin and bear when your child has a plastic helmet on:) > > I'm so happy I found this group and I'm also thankful that it is extremely supportive. It's nice to be part of a community that sincerely tries to help one another. > > > Luke, 14 months > STARband 4/7-6/10/09 > DOCband 9/2-12/7/09 > NYC > Quote Link to comment Share on other sites More sharing options...
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