Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 We're here. I'm Mom but my son is the patient at 14. I struggle with this question as well. We love our Doc, but he's a Pediatric Pulmonologist and I wonder when turns 18 if they'll " kick " us out to make room for the adorable CF patients as our doc is the regional CF director in our area. We've been there since dx at age 6. I too, am a firm believer in the squeeky wheel and have just been pouring over our medical benefits book as we have been denied for pulmozyme, prolonged zithromax and the vest. The appeals process looks pretty straight forward to me upon reading. There's also an option for an " external " appeals process. I am also allowed to be " in person " on the appeal. You can bet your pt therapy I'll be there in person to be the squeekiest wheel they've ever heard. We already have the vest, even though we aren't " approved " yet. We've already logged over 25 hours on it. I just wish we had the pulmozyme to loosen the mucus before " vesting " as we call it here. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 Dear Ellen, Your son is still a child, so I hope he can stay in pediatrics at least until he is through high school. Actually, stay in peds. as long as possible. That's where the care is the best! Some children's hospitals in the US allow kids to stay on until or through age 21. I think this is best, because The kids are going through so many transitions at 17-through-18 with graduating from high school, etc and I think at 21 they are older and better able to handle adult doctors and adult hospital care. Anyhow, again my advice is to stay in peds for as long as possible, In Canada we have fewer options (it seems ...fight to stay there. Bronchiectasis treatments tend to come from the CF studies and pop. and the best CF doctors are still in peds. Trust me, I'm seen the big CF adult specialist in Toronto at the largest CF adult clinic in North American (and was not overly impressed - the hospital adult care was terrible at St. Mike's) and did not get anywhere, really, etc and peds is best!!!!! Hoping you can get Pulmozyme covered. Realising its expensive, but its made all the difference for me and I'm sure it can help your son. Hope he gets the vest and zithromax, everything he needs. Keep on being the squeaky wheel!!! Hugs:0) LizPre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch: Live Life Then Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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