Seeking support in the battle against insurance co.

[Guest guest]

Good afternoon fellow RSS parents. I'm writing today to fent and to

seek support or advise from those of you who are more experienced.

As some of you may know, I have been trying to get our nsurance (Blue

CrossHMO)to cover our apt. in NY with Dr. H on January 9th.

Yesterday we were notified that our request was denied. Come to find

out it's because it is undetermined if RSS is the official diagnosis

for . I'm so frustrated! We finally had a genetic

counslor tell us RSS and were somewhat relieved at the idea that we

had a name for our pain and a treatment option available in NY. Now

were back to square one! I think were just going to let friends help

us $$ and go to NY anyway. Then try to find a doctor here who will

respect her thoughts and ideas for treatment. Our insurance is

insisting that we go to the University of San Fransisco to seek

further genetic consultation. So I have been on the phone all day

trying to get an apt. there before Jan. SOmething else

interesting...I spoke to an endo in Beverly Hills (reccomended to me

for RSS)and he said that he had worked with Dr. H, but was unsure of

her treatments, because she hasn't published any material on RSS. He

said that all endo's could probably benefit from her expertise, but

right now, the endo's in our area would prob. be sufficent? ????????

HELP! I'm so confused! I just want to find help for Chris. We took

him in yesterday and he has lost 1 lb. again!!! and he still is

showing ketones (trace)....what should I do????

Missy Anne (christopher 4.5,27lbs,37', G-tube, fundo)