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I need some advice please

My husband is in the Army and has been told we have to move to Ft Carson CO in april we currently live in Ft Drum NY, The hospital near there is Childrens in Denver my question or concern is My son takes Deflazacort which we get here easily I am wondering if anyone near that area has experience getting it. How do I go about it The dr here has said that once Jacob is no longer his patient he can not write the script can any dr do so? Maybe I am making a mountain out of a molehill. I am freaking out a little bit, I have to admit. So I am just looking for some advice Trying to decide if I should push the army to just let us stay here in NY any advice would be helpful. Thank you in advance
Lynn

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Permalink Reply by Lori Ware on September 17, 2008 at 10:40am

There is a good Dr. in Utah, Dr. Kevin Flannigan. It is about a 7 hour drive from Denver, but you could get it from him and use him as your Dr. You could keep seeing your Dr. in NY and use miracle flight to fly out there...not the most economical choice, but one that works. I have to fly from Louisiana to OH to see Dr. Wong as we have NO good Dr's (my opinion...certainly none within 6 hours or more) within driving distance and I fly free 2x per year to see her.
Good luck! I lived in CO for 8 years and LOVE it!!!!
Lori

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Permalink Reply by Paul Johnson on September 17, 2008 at 10:47am

Lynn,
Check with Angela (http://community.parentprojectmd.org/profile/Angela) she goes to Children's in Denver (and from her posts seems to be very happy). I'm sure she can give you all the details you'll need about the clinic there and probably be able to get you connected before you even move out there so the transition will be smooth.
~Paul

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Permalink Reply by Michael Kessler on September 17, 2008 at 11:12am

Lynn,
I am stationed at Peterson AFB in Colorado Springs. We have had very good service from the Childrens hospital in Denver. For local care we take Brennan to the Air Force Academy, Dr. Tan, he has been great and works well with the Childrens Hospital. We just filled our first prescription of Deflazacort. We got the prescription from Dr. Apkon and placed the order with Masters International. Maybe your Dr. in New York can get in touch with Dr. Apkon in the rehab clinic (720-777-2806) and can just transfer your prescription.
Mike

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Permalink Reply by Barbara Niederhoff on September 17, 2008 at 11:14am

I'm in Colorado & Dr. Susan Apkon at Childrens Hospital gave my son a deflazacort prescription. We're kind of new to this, but it seems the docs at Childrens have been pretty good at offering options and respecting decisions.

Dr. Apkon attended the latest PPMD conference this summer, and came back with ideas and plans to improve their program.

And I'm sure Angela (mentioned above) can tell you more.

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Permalink Reply by Liisa Underwood on September 17, 2008 at 11:18am

My family is considering moving to Colorado. Our local clinic in Washington, DC has WONDERFUL things to say about them. I suggest calling their staff and talk to them about their approach to Deflazacort. I've talked to them before and I've been very pleased so far.

Liisa