Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 , Yes, the most important aspect of treatment is that the helmet is working!! I'm ecstatic that you are seeing progress with Wyatt. Please keep us posted on his progress! Information overload is one of the hazards of educating oneself about plagiocephaly and treatment options I'm very curious as to what helmet your son is using, so if you do find out the specifics, let us know - it will be helpful info to add to the database for the COPC entry as well as share with any new parents to the board from the Kentucky area exploring options. Repo did work for Remy - she received outstanding correction. She was diagnosed with brachy/plagio so long ago, that the COPC helmet wasn't even FDA approved yet - in fact, the closest FDA approved product was about 6-7 hours drive from our house. We decided to give very aggressive repo a go, and we did so from the time she was 5 mos to 13 months. Her progress pics are in photos before and after repo album, under Remy - it's sort of a collage of her side and top views if you are curious. Repo just won't work for every situation, tho, and bands and helmets are wonderful - I'm thrilled we have FDA approved options in our area now, and as young as Wyatt is, you should expect great correction as he moves thru his growth spurts and the helmet does its job. Take care, Christie, Mom to Repo grad Remy -- In Plagiocephaly , Shafer <wyattthebear@...> wrote: > > Thanks, Christie > I have emailed some other parents that used COPC and have gotten some responses. Gosh, I wish I'd have found this group before we got the helmet! Basically I am more confused than ever about what helmet my child has, I am definitely planning on getting to the bottom of this tomorrow. I guess the good thing though is that the helmet, whatever it is, seems to be working. Anyway, thanks for the info. So did repo work for your child?? At this point I really wish we had been more aggressive about repo so as to avoid this mess all together. > Thanks, > > Louisville, KY > mom to Wyatt 6 1/2 months > helmet, 2/1/2007 > > redlocks2003 <clkline@...> wrote: > Hello , > > I am in Kentucky, too! My plagio " baby " is almost 5 years old now - > she is a repositioning graduate, though, we never ended up using the > helmet. Despite that, I have always had a personal interest in > helmeting and banding options around our area. It may be helpful to > you to if you don't get any COPC-specific msgs on the board here, to > check the " Database " section of the group, and reference > the " Helmet/Band Database. " In the listing for COPC, there are > several parents who have left their email for contact by other > parents who would like some personal stories about how their > treatment went. I strongly urge you to drop them a line when you > have time and get some impressions. > > By no means a scientific sample whatsover, anectdotally I can recall > only 2 babies out of 7 posting in this group being able to complete > their treatment at COPC. Since I have not been very active on the > msg boards in months, maybe some of the group moderators can recall > recent COPC experiences shared on here. Some of the reasons for the > parents' stopping treatment ranged from no progress, to fit issues > that were unable to be corrected, to one case of head shape being > worsened. An example of a successful COPC graduate in the group is > in the Photos sample J, I believe. The other successful > graduate that I know of I corresponded with thru personal emails. > > I do know that the actual COPC brand helmet is FDA approved. Unlike > any of the over 20 other FDA approved helmets and bands, and any of > the unapproved ones that may be out there, it is the ONLY one I know > of that never has any follow up appts. at the ortho, or any helmet > adjustments made. I actually did not believe this when I first read > it in a post, and asked for clarification from the poster. In > addition, I ended up calling COPC myself to confirm this info, which > they did. Now you did mention that your baby had a NEW helmet from > COPC?? Well, there are brands of helmets and bands that are made > from a manufacturer company, and any ortho anywhere can choose to do > business with them by ordering that brand of helmet and using it in > their practice. Perhaps this is the situation with your baby. If > this is the case, I am alarmed that there will be no ortho follow- up > appts and adjustments - as I said before, I know of no other brand > besides the actual COPC brand helmet that doesn't require follow-up > ortho visits. The other possibility is that COPC is using a new or > modified design of their FDA approved helmet, which would imply that > this new helmet is not specifically FDA approved - I don't know if > this is important or of interest to you, but it may behoove you to > get clarification on this, since FDA approval can really be a > keystone for insurance approval, etc. > > Did the plastic surgeon take any photographs of Wyatt at the visit? > What is his method to remember what your son's head looked like thru > memory alone every 5 weeks or so? Linear measurements are a 2 > dimensional way to measure a 3 dimensional problem (head shape > deformity,) so on principal I don't have an argument with someone not > relying on 2 dimensional measurements solely for assessment, but a > visual record of progress can really be encouraging throughout > treatment. For yourself, you might want to use some of the at home > methods repositioners try, to keep abreast of head shape changes. > You can fine them in the Files, Repositioning headquarters folder. > Some insurance companies are requiring measurement/photo proof of > improvement as well. > > Please feel free to contact me if I can be of any help, and I'd also > be happy to chat by phone if you ever want another plagio parent to > talk to > > Take care, > > Christie, Mom to repo grad Remy > > > > > > > > - don't get down on yourself - You are being > > proactive!!! IYou're > > > here!!! :-D > > > 'm sorry I don't have experience with passive helmets - we had a > > Hanger band > > > - but If you are seeing improvment than that is good. > > > Maybe call the dr that gave the RX and find out why he wanted to > > go passive > > > - and if he knows about hanger or doc or starband. > > > Also, I'd call COPC to see the head of the helmet dept. - Just to > > make sure > > > the band is made correctly. But that's just me. :-) > > > > > > > > > Jen and Luli > > > Right Tort - Plagio - Hanger Band Grad - CA > > > _Tallulah Jayne -_ (http://www.babiesonline.com/babies/j/jens5th/) > > > > > > > > > > > > > > > > > --------------------------------- > > Need Mail bonding? > > Go to the Q & A for great tips from Answers users. > > > > > > > > > --------------------------------- > Finding fabulous fares is fun. > Let FareChase search your favorite travel sites to find flight and hotel bargains. > Quote Link to comment Share on other sites More sharing options...
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