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Re: Help in Colorado

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At 3 mths my son was diagnosed with plagiocephaly, at 5 mths the helmet was fitted. It was one of the worst things i have ever went through. i was told by a Pediatrician that he would never recommend a helmet and he considers it cruel and unusual punishment, My son wore the helmet for 1 week, he would scream every time we took it off and put it on. He is 1 now and his head is a little flat on the left side, but no one but us notices.

From: outbackyak2 [mailto: outbackyak2@...]Plagiocephaly Date: Wed, 24 May 2006 18:48:34 -0000Subject: Re: Help in Colorado -I'm so impressed that your doctor referred you directly to Cranial Tech! Don't be too discouraged initially. If you want to do it, there's probably a way to make it happen. I've seen people run fundraisers and all kinds of different things to gather the money.The short answer is this: If insurance covers, and you use Angel Flights, you could travel for under $50 per trip (ground transportation in Phoenix, and a little food). I don't know what airports Angel Flights uses, so parking fees or ground transp. might be a little different? One small advantage to being in CO and having to travel for treatment is that I think insurance might be more inclined to pay. They don't see as many claims for this, so they don't look as closely at it. I had absolutely no trouble at all getting insurance coverage. Cranial Tech was very helpful with that. If you have Kaiser, it may be a different story. My insurance (Anthem BCBS) even paid the out of network provider at the in-network benefit. They considered it Durable Medical Equipment, so if you look up what your insurance benefit for DME is, you should be able to know how much money you want to fight for. I think there are other ways insurances end up classifying, covering, etc., but that's how mine worked out.CT charges $3,000, but if you pay up front it's only $2700. I had to front that and wait for insurance to reimburse, but I got it all back.The travel is also pretty manageable. Almost all of our travel took place when Southwest was hitting the Denver market. So, flights were pretty good deals. I think they've gone up a little bit since then, but they're still pretty reasonable. I've heard a lot about Angel Flights, and as I understand it, especially with a prescription directly to CT, they'd probably fly you. (I was afraid to fly in a small plane over the rockies!)On top of the flights, I paid $9 per day to park at DIA, about $40 per day for ground transportation in Phoenix (either cab or SuperShuttle were about the same), and about $10 for some bad food in the airport in Phoenix. There is a Starbucks right next to Frontier's terminal in the Phoenix airport, and that sure came in handy!As far as the number of trips, mine worked like this:We took 10 trips total, but my daughter wore 2 bands. A very small percentage of kids need 2 bands, but severity and age are contributing factors.Once you've paid for a DOC band, you can visit any CT for adjustments. It's best to see the same orthotist, but if you have a trip planned, you can incorporate an adjustment if there's a CT in the area.Because I had family who could house me for free, I went to San Diego for the first trip. CT rushed the production of our band, they cast her on Monday, and had the band back for fitting on Thursday. That saved us a flight, and we got to spend time with family.After that, we made 4 trips to Phoenix. These were every 1 1/2 weeks due to her age. On the 5th trip, they made the last adjustment to her first band and cast for the second band. (We had pre-authorized the insurance, and paid again.)She wore the first band for 2 weeks, and she was fit with the second band on the 6th trip. We made 4 more trips for adjustments. On the 10th trip (which strategically coincided with a trip we had to make to San Diego for a wedding), she had her last adjustment and an exit cast. She wore the band 2 more weeks, and then we took it off without needing to see the orthotist again. Last travel recommendation: buy the sit-and-stroll (car seat with wheels that pop out of the bottom to turn it into a stroller). It's the single best piece of baby gear I've bought in 4 years. All that said, if you felt like you wanted to have treatment locally, you could probably find something that would work. This group is a great resource, with tons of information about what to ask, and what answers to expect. And the people here can help make sure the band you get is a good fit, and help you understand what to expect with adjustments, etc. At your son's age, you would definitely want to make sure any band you get is active, and gets adjusted every 2-3 weeks(?) I know how overwhelming and confusing this must be for you right now! But I promise, it ends. Whether you decide not to do anything, or pursue treatment one place or another, once you've made your decision you'll be relieved. I actually had to look at a calendar the other day, and realize that it was only 10 weeks ago that she graduated - she wore the band longer than that! I barely remember it. I have an almost 4-year old as well, and it may as well have been her that wore the band - it feels like it was that long ago! I don't give plagio a second thought - unless I happen to check this board and see someone in Colorado. Makes me crazy, so I try to help by posting really long messages with lots of detail that you probably don't want. :) But I wish someone had told me all these things when I was trying to figure out how to do it. (I actually rented a car my first time in Phoenix - HUGE mistake, way too much hassle!)Please feel free to contact me if you want. I know it would have helped me to have someone local to share with! Good luck!Tammy>> Hi, my name is and my son's name is Evan. We had Evan's nine > month ped visit yesterday and finally after six months of being told > his head would round out by itself, we were given the recommedation to > contact Cranial Tech. Problem being, the closest one is in Phoenix and > I simply don't think we can afford the visits back and forth so often. > I am really looking for some suggestions here. I looked at the page > that gave resources for places in Colorado but I don't really > understand who or what those people are and do. For those of you from > Colorado who have made the many trips out to Phoenix, can I ask how > many visits you had to make and an approximately how much it cost. > > If there is any way we can have his head worked on without having to > travel we might have some hope. I think he would benefit from this > tremendously and I pray that all hope is not lost but I'm thinking > that although our insurance will cover at least a portion of this, > unless we win the lottery we may never be able to afford to do this > otherwise. I am open to any advice. Thanks for listening.>

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