--- In spinabifidacentral@yahoogroups.com, "capaky" <scott-angie@x>
wrote:
> Hello everyone! I am new to this list. I have a 15 year old
daughter
> with SB (L1-S-3). She was scheduled to have bladder augmentation
> surgery, (forgive me I can't remeber technical names) a "sling"
under
> her bladder for support, and an opening by her belly button to cath
> through. She has been sick for the last year with almost monthly
> UTI's. She goes through periods when she is sick, it looks like a
> UTI, but the bacteria is dipthoids. They tell me this is normal
skin
> flora, but her count is over 100,000 colonies. I really think this
> overgrowth is making her ill, but I can't get anyone to listen to
me.
> The surgery is supposed to "cut down on infections".
> My reason for posting is that today I got a notice in the mail
> canceling her surgery. We have Mainecare for Carissa, which is our
> state's version of Medicaid and the doctor stated that he can
> not "afford to do such an involved surgery for no compensation from
> the state of Maine". He then urges me to contact my
representatives,
> the DHS commisioner and the newly elected governor and anyone else
> who might" empathize with your and my cause". Has anyone ever heard
> of such a thing??? I called Mainecare and they said they compensate
> about 80% of what he charges, BUT he withdrew from the program last
> year. Why couldn't he tell me that when I was in his office on Oct
> 29th? I had to wait5 months for that appointment!! He is also the
> ONLY pediatric urologist that I know of in the state. What can I do?
> I want to call every news station I can think of and all my reps
and
> sue him for pain and suffering (which certainly will happen to
> Carissa if she has to be sick another 5 months). Does anyone have
any
> suggestions?


HI,
My daughter goes to Dr Weiss at Yale New Haven Childrens Hospital and
he is the best Pediatric urologist on the East Coast from what i
understand. I would give there office a call Yale has a program that
pays for kids with special need if they need medical treatment and
you dont have any insurance, or maybe you can get your Maine
Insurance to cover it if there are no other doctors who do that in
your state. There Phone number is 203-785-2815 They cant deny you
coverage in another state if there is other doctor who does it can
they??
Amy