Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Hi : I feel so bad for you! I searched our group archives all the way back to beginning of 2001 to see what turned up under Colorado. I found message #'s 11204,14519,15359 & 34469. It looks like CO is clueless about plagio & does not support banding for some unknown reason. Many CO parents travel to Phoneix AZ Cranial Tech clinic for DOCband treatment. Maybe you could email these parents direct & ask them for help. I don't think any are active in our group any longer. Selena Cobb was very helpful and extremely friendly as I had spoke with her several times in 2001 about her son's treatment, she's in CO.. There are some specialists names listed along w/hospitals: I really hope it helps some!!! Debbie Abby's mom DOCgrad Michigan I'll copy & Paste the messages below that I found: > Message 34469 of 46302 | Previous | Next [ Up Thread ] Message Index Msg # From: " sjungar " <sjungar@...> Date: Sun Jun 2, 2002 12:22 pm Subject: Help ... our ortho says our son needs 2nd band after only 8 wks of treatment ADVERTISEMENT We are concerned because our son has only been in the helmet for 8 weeks when his ortho told us we need to get a second band, as soon as possible. (We have now agreed that July 3rd will be the casting date and he will get the helmet 10 days later which will mean he gets the second helmet after 3 1/2 months.) Then she said he would be in that band through November. (In the beginning she couldn't tell us how long treatment would be, she just kept saying " average treatment time is 4 1/2 months. " ) It seems a little early to decide he needs a new band. BACKGROUND: We have not been able to get our insurance to pay, and we live in Colorado so we have to fly to Arizona for treatment every other week. (Which will be $6000 in helmets and 7 months of flights and cab rides.) Will was 7 1/2 (almost 8) months old when he started and is 9 1/2 months now. We haven't seen much improvement, and we believe our ortho is not that experienced and may have messed up our helmet early on with bad adjustments. We use Cranial Tech in Arizona. His flatness is all on the back side, and we were told it was moderate to severe (on a scale of 1 to 10, a 7 or 8.) (His cephalic index is 99.25 which is more than 2 standard deviations from normal.) When we began treatment our ortho didn't do any pictures or measurements until I insisted. She also hasn't done anything but " eyeball it " to decide he needs a second band. I think I may insist on another set of measurements and pictures! (When I asked, she said that it would come out differently each time because it is not that scientific!!) He had bad luck with red spots early on and she had to adjust the band accordingly. Now the band is pretty loose. When he turns his head it can actually move so much that his ear is underneath it. Is this normal? We want to do what is best, but we were wondering (1) if anyone else has had this experience where they recommend a second helmet so early in treatment, (2) if anyone else thinks Margie in Arizona is not that good (I know there was a different therapist there last year), (3) how the helmet is supposed to fit, (4) if anyone else didn't get any measurements or pictures done (until they insisted), and (5) if anyone has anything else to add. ANY advice will help!!! Thank you in advance!!! -Mom to ___________________________________________________________________ >> Message 15359 of 46304 | Previous | Next [ Up Thread ] Message Index Msg # From: " Connie " <conniel@...> Date: Tue Apr 3, 2001 10:07 am Subject: Re: Anyone in Colorado with the STARband? ADVERTISEMENT Is there any one in Colorado that is using the STARband? I know a mom that is looking for treatment options in Colorado. Hi Jaya, I live in Laramie Wyoming and travel to Colorado Children's hospital and use the STARband. We initially went to Doctor Mathews for the script- he is at Children's. We now see an orthotist named Greg Smits there. Things in Colorado are not up to " speed " . I think Selena Cobb can confirm this too. There are really no neuro's around that will support any band. She flew to somewhere back East and now is in a DOC and goes to AZ. We have been banded since 2/12. We started out good, but RSV and then pneumonia slowed us down. She was in the hospital for each. Anyway Greg has only done 7 bands so I watch things very closely and this site gives so much information. Greg has done a great job so far. Selena would also be a good resource, she lives in Denver, I believe. If you have any other questions, please ask. Connie & Reaghan (8/3/00), banded (2/12/01) ____________________________________________________________________ >>Message 14519 of 46304 | Previous | Next [ Up Thread ] Message Index Msg # From: " Selena Cobb " <selenacobb@...> Date: Mon Mar 19, 2001 10:20 am Subject: Re: Specialists in Denver/Boulder CO? ADVERTISEMENT Hi , Where is Colorado do you live? I live in Denver, right by the University of Denver near I-25. We had a tough time finding a specialist that supported band therapy. The specialists at Children's Hospital, Dr. Winston, and Dr. Handler both boo hoo the band and think of it as a waste of time. We flew to Northern VA to see a cranialfacial specialist since we couldn't find anyone in Denver, plus we have family back there. There is Dr. Chaldry at Presbyterian St. Luke's that Ann Crane (another mom whose child has plagio) that might be able to help. I'm not sure if he's a specialist or not. Our pediatrican wrote the script for the band to get us started since time was ticking by and then we saw the specialist a few weeks later. Good luck. Let me know if I can help out in anyway. Selena & Ian from Denver 8/7/00, banded 3/6/01 ______________________________________________________________________ >>Message 11204 of 46304 | Previous | Next [ Up Thread ] Message Index Msg # From: selena@... Date: Sun Jan 21, 2001 5:45 pm Subject: Re: What to expect once the referral has been sent ADVERTISEMENT Stacey, Thanks for your support. There was a bit of confusion in the beginning about the entire referral process. But it's straightened out now - we have an appt with the neurosurgeon on Feb 7th (first available of course) in Phoenix and upon that visit, he'll determine Ian's severity of plagio and have xrays to rule out cs. We are flying to Phoenix since the neurosurgeons here in CO don't support it. However, I found a place in Colorado - Rehab Designs of America that make the Star Band. Upon receiving the prescription from the neurosurgeon, it'll take another 2-3 weeks before getting the Star band. I almost wish I could get the casting done now and receive the the band once we complete our visit with the neurosurgeon. Time is so precious. Cranial Technologies in Phoenix is willing to work with us so we can have the band casted and go home with it the very next week after the neuro visit. I'm tempted to go that route simply b/c Ian will be in the band 2-3 weeks earlier. Do you think that makes a difference? The only downside is the travel aspect. Do you know the difference b/n the star band and the doc band? Are they the same? Why is there such a difference in price? How's Hannah doing with her band? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.