Re: Improper fitting DOC Band...UPDATE

[Guest guest]

Thank you all for your support and opinions!

I actually called the local office Friday and voiced my concerns, they asked us to come in that afternoon. I thought I should try and clear it up with them first because I don't want to upset them by going to corporate as I do still have to finish treatment with them. Again my concerns seemed preposterous. The clinician told me that it was "fluid" over his ears. BUT a couple weeks earlier he had a mass in another area which they told me was fluid. That mass is moveable under the skin, the indentation where the band ends on the right side is hard and does not move under the skin. It feels like his skull is molding around the band because it is so tight. I guess to shut me up she suggested doing photographs which they compared to our set of photographs one week before treatment began. The photographs show that his protruding forehead has gone down remarkably, which I have noticed. But it does not show "rounding out" on the back right side. She said that he still has a week and a half left in the band and that growth happens from the midline out. The clinician said she'll send the photographs to a supervising clinician at another location but she feels she'll say the same thing. She also said he is definitely outgrowing the band and they should be able to get one more adjustment out of it. However I still feel that if it fit correctly in the beginning he should be able to finish his treatment in one band as I was initially told. She did not do any adjustments, even with the chaffing of skin over the right ear because when she put the band on it didn't rub there. But that's not where the band falls after a couple minutes of him wearing it. Sure that's the perfect spot that we want it to sit, but the band falls into it's own place and it rubs on his ear to cause irritation. We go back Wednesday for our final adjustment, if they can manage as there is barely any foam left on the right back side.

In the meantime, I am currently writing a letter to Cranial Technologies corporate office stating my concerns and what we have been going through. I also plan to include photos of not only his head, but the band as well. I have been taking pictures since week one when I noticed the fit being quite small. I hope to have it ready and overnight that to them either tomorrow or Tuesday.

I'll keep everyone posted if there are any changes. Again thank you for all your support. This group is amazing and I am so glad to have found it.

Thanks,

Tara

In a message dated 1/20/2011 11:43:50 P.M. Eastern Standard Time, crazy05550@... writes:

My almost 5 month old son has torticollis since 2 months, and plagiocephaly with flattening on the back right side of his head, bulging on the front right forehead, and his right ear has shifted forward. He has been in a DOC Band for almost one month (fitted on December 22 at exactly 4 months of age). His treatment was expected to be about 6 weeks. When we went back for our first adjustment (he goes weekly), I voiced my concerns of the fit of his DOC Band. It seems very tight on the right side of his head, which is where he has his flattening. In fact they had to shave some of the foam down in the "holding point" on the bottom right over the neck because it was causing some pretty bad redness and irritation. Even after shaving it, it still is extremely tight when compared to the left side. It also seems to bother him because he is constantly pulling on the right side of the band, not the left.It also fits incorrect around his right ear. (It is the side with the velcro strap.) For being "custom made" there is about a 2 inch or more gap from the back of his ear to the start of the band, and the sideburn piece covered part of his ear where he now had some chaffing of the skin. They have shaved the sideburn piece each time but it still covers some of the ear and irritates the skin. To me it seemed that the band was much too small from the very beginning which is why I brought it up week one. When I did bring it up at the first adjustment, the clinician quickly said that it fits properly and you want it snug so it doesn't move. I understand that we want to prevent it from moving, but it seems odd that we are putting so much more pressure on the right side which is the side with flattening, than the left. The left side fits great...it goes around the ear, not over it. There is enough pressure to keep it in place but not too much.I have brought up my concern each and every week that we have gone back, we have seen 2 different clinicians, and yet my concerns still get pushed aside as "it's normal". I even said at our 2nd adjustment that I felt the band was much too small and that I didn't want them telling me in 2 weeks that he needs a 2nd band. She told me that if that were the case then yes something would be wrong with the band. I honestly feel like this may be a ploy to sell a 2nd band and make more $$$. I asked with curiosity what's the average life expectancy of a band for a 4 month old, and she said about 8 weeks. I though ok great, our expected treatment is 6 weeks, the band will last 8 weeks....we should be ok. So after 4 weeks we have seen significant improvement in his forehead, but I do not see any rounding out on the right back side. I'm pretty sure it is because there is no room for growth as it is so tight. I have also noticed that when we remove the band for bath and cleaning that there is a significant indentation where the edges of the band separate under the velcro strap. That gap between where the band starts and ends has about a 1 inch gap between where the band meets. When the band is removed the skull sticks out quite a bit from where the gap sits. You can actually see the entire vertical line where the back of the band stops indented in his skull!!! I brought this up at our last appointment this week and she told me 'not to dwell on a little indentation as long as we see overall progress'. I can't help but dwell I paid $3000 for this out of pocket. I feel like we are doing more harm than good with his flat spot...if the band wasn't on wouldn't his skull naturally hav e grown to be about where it is in that gap where there is no band. I am not expecting perfection here but for the price we paid for the DOC Band, I want to get descent results. So at our last adjustment appointment, the clinician also told me that he has outgrown the band. (Surprise, not!) She wanted to remove it next week, which would only be 5 weeks into treatment! The right side is still flat!!! But then after I complained she said she may be able to get one more adjustment from it and we'll remove it the week after. Honestly I do not see how she can get another adjustment from it; there is probably only 1/8 of an inch of foam left on the right side. My husband, who was against the helmet from the beginning, wants to take it off now because the indentation/ bulging on the right is so bad. Since our appointment on Tuesday, where she gave him a "large growth adjustment", the indentation seems to be getting significantly worse by the day. (Is there a way to send pictures?) Also, his Physical Therapist each week has stated that she does not feel the band fits right since he first got it. We saw his pediatrician the second week in the band and he too said it needs some major adjusting, but that I would be surprised how they can adjust these things without making a new band. After seeing how bad the indentation on his already preexisting flat spot has gotten just since yesterday, I am really bothered by it. I do not feel comfortable leaving him in this band another day. Does anyone know if each office has a supervisor I can speak with first? Should I just call their corporate office? In 4 weeks I have gotten nowhere with complaining to the 2 clinicians we have seen. I have not seen anyone in the office except for the 2 clinicians, 2 clinicians who travel there alternating weeks from Virginia, and 2 office staff ladies. How often are DOC Bands made where they do not fit properly? How often do they have to remake a band? Any suggestions on what you think I should do would be greatly appreciated. I am completely at a loss. I am typically the nice one that doesn't complain, and maybe that's why my "gentle complaining" has gotten me nowhere. Thanks, Tara

[Guest guest]

This line is particularly reminiscent of " fit assessment failure " to

me (been there, with a STARband, but not in command of your entire

story). Be sure to include a similar description in your complaint.

> She did not do any adjustments, even with the chaffing of skin over

> the right ear because when she put the band on it didn't rub there.

> But that's not where the band falls after a couple minutes of him

> wearing it. Sure that's the perfect spot that we want it to sit,

> but the band falls into it's own place and it rubs on his ear to

> cause irritation.