Re: Seeking support in the battle against insurance co.

[Guest guest]

Hey Missy,

I thought you were only looking for endos at UCSF. There is a

geneticist there that's the BEST! He mostly works at Kaiser, but also

in SF, so his waiting list is very long, sorry. But, if it's a

diagnosis you need, this guy is really thorough and specializes in

growth disorders. His name is Bachman.

As far as Brock's email, look for her last post, I think it

was Nov. 7 and click on send email.

Cindy

>

[Guest guest]

Missy,

Hi. My name is Reah. I have a daughter named Chloe. She is

28mo,17lbs,31in. We too first had blue cross in ga but they would not pay enough

for her gh so we put her on peachcare. I think all states have something like it

but you have to make a certain income. We found out when Chloe was 9 mo. and we

started Cyproheptadine(periactin) and when she turned two recently we began

gh(which I'm learning now was probably too early) and she still will not gain

weight.Simply because she won't eat. She has not started losing weight though. I

would be crazy. Your son has a g tube and he still losing weight? How can that

be? I an dreading having to do that to Chloe but if she will still lose weight

with it than I'm not doing it! What is Fundo? I hope your son starts to gain

weight and I'm so sorry about the set back. Good luck:)

In faith,

Reah and Chloe:)

MELISSA BYRD wrote:

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)

[Guest guest]

Reah,

Your so sweet! Thanks for your thoughts. I hope you get all your questions

answered...did I understand that you to are going to NY?

I think its pretty interesting that Chloe isnt wanting to eat yet is on the

periactin? I don't know very much about it though. I was hoping someone would

put on it....he eats but very small amounts and limited textures. He

doesnt have the desire to eat very much.Yes it is very frustrating that Chris

has a g-tube and has lost weight. When he went in for the g-tube and

fundoplication (they go in and make the esphogus smaller so that the stomach

contents cant come up, it basically corrects the reflux issues) he weighed

26lbs. over the last year we have reached 28lbs...but we're currently back at

27. Go figure! He can take in 1600-1900 calories a day and not gain

weight????? I would blow up! LOL!

Best of luck!!!!

I have enjoyed chatting!

Missy ANne

REAH MCNEESE wrote:

Missy,

Hi. My name is Reah. I have a daughter named Chloe. She is 28mo,17lbs,31in. We

too first had blue cross in ga but they would not pay enough for her gh so we

put her on peachcare. I think all states have something like it but you have to

make a certain income. We found out when Chloe was 9 mo. and we started

Cyproheptadine(periactin) and when she turned two recently we began gh(which I'm

learning now was probably too early) and she still will not gain weight.Simply

because she won't eat. She has not started losing weight though. I would be

crazy. Your son has a g tube and he still losing weight? How can that be? I an

dreading having to do that to Chloe but if she will still lose weight with it

than I'm not doing it! What is Fundo? I hope your son starts to gain weight and

I'm so sorry about the set back. Good luck:)

In faith,

Reah and Chloe:)

MELISSA BYRD wrote:

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)

[Guest guest]

Cindy,

Thanks! I actually did get an apt. today with Dr. Packman (UCSF genetic dept.)

for nov.28th! Wish us luck!

Thanks a bunch!!!!

Missy ANne

mom2brendan2000 wrote:

Hey Missy,

I thought you were only looking for endos at UCSF. There is a

geneticist there that's the BEST! He mostly works at Kaiser, but also

in SF, so his waiting list is very long, sorry. But, if it's a

diagnosis you need, this guy is really thorough and specializes in

growth disorders. His name is Bachman.

As far as Brock's email, look for her last post, I think it

was Nov. 7 and click on send email.

Cindy

>

[Guest guest]

Missy,

Your so funny! That reaaly doesn't seem like enough weight for the g

tube to be worth it. How old was he when ya'll put it in? How do you keep him

from playing with it? I so hope he starts to gain weight for you. I know I wish

I was as uninterested in eating as Chloe is all this worry makes me eat.lol I

know that there disorders out there where people just constantly eat. You would

think that would have to do with some sort of hormone inbalance and if so why

couldn't they just give our kids that. I guess if it was that simple someone

surely would've some up with that by now. Thanks for chatting:)

always here,

Reah and Chloe:) 28mo,17lbs,31in

and holding

MELISSA BYRD wrote:

Reah,

Your so sweet! Thanks for your thoughts. I hope you get all your questions

answered...did I understand that you to are going to NY?

I think its pretty interesting that Chloe isnt wanting to eat yet is on the

periactin? I don't know very much about it though. I was hoping someone would

put on it....he eats but very small amounts and limited textures. He

doesnt have the desire to eat very much.Yes it is very frustrating that Chris

has a g-tube and has lost weight. When he went in for the g-tube and

fundoplication (they go in and make the esphogus smaller so that the stomach

contents cant come up, it basically corrects the reflux issues) he weighed

26lbs. over the last year we have reached 28lbs...but we're currently back at

27. Go figure! He can take in 1600-1900 calories a day and not gain

weight????? I would blow up! LOL!

Best of luck!!!!

I have enjoyed chatting!

Missy ANne

REAH MCNEESE wrote:

Missy,

Hi. My name is Reah. I have a daughter named Chloe. She is 28mo,17lbs,31in. We

too first had blue cross in ga but they would not pay enough for her gh so we

put her on peachcare. I think all states have something like it but you have to

make a certain income. We found out when Chloe was 9 mo. and we started

Cyproheptadine(periactin) and when she turned two recently we began gh(which I'm

learning now was probably too early) and she still will not gain weight.Simply

because she won't eat. She has not started losing weight though. I would be

crazy. Your son has a g tube and he still losing weight? How can that be? I an

dreading having to do that to Chloe but if she will still lose weight with it

than I'm not doing it! What is Fundo? I hope your son starts to gain weight and

I'm so sorry about the set back. Good luck:)

In faith,

Reah and Chloe:)

MELISSA BYRD wrote:

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)