Re: How to convince Endo?

September 10, 2005

Have you ever tried asking the MAGIC Foundation for literature to give your

endo?

Inga

At 10:45 PM 9/10/2005 +0000, you wrote:

>

> Hey everyone,

>

> It's been forever since I've posted but I read all the posts.

> Olivia's doing ok latley, having more constipation problems but

>that's a never ending battle anyway.

> Her attitude is horrible, there's just no reasoning with her on

>anything. It's dissapointing that the 3yr old next door understands

>directions better than my almost 6 yr old and doesn't tantrum like

>Olivia still does. Sigh, the school will be doing a full ADD/ADHD

>workup soon so that might lead to some answers.

>

> Now on to the Endo. Our Appt. isn't until Oct. 4 but I'm

>expecting a battle since little is known about RSS in Canada and

>they don't really see the need to treat it at all. Again it's

>harder for me since the Dr's keep saying " you're small so she'll be

>small " I'm not quite 4'10 " but come on, I was never that small!

> For a quick comparason:

> Me age 5, 40 " 40lbs (yes I was a chunk, lol)

> Olivia age 5, 35 " , 18lbs

>

> Me age 6, 43 " 46lbs

> Olivia almost 6, 36 " 22lbs

> Basing it on this alone and we'll be lucky if she even reaches 4',

>not to mention all the other great benefits of GH.

>

> Thankfully my mom kept our growth chart from on the wall when I

>was growing up so I plotted all of MY charts to give to the Dr.

>

> I'm expecting the Endo to be non responsive to GHT so is there

>anyone else out there who was successful at convincing their " not

>willing " Endo?

> Again, I have no idea what she will say but I really want to be

>prepared for when the time comes! Anything will be apprectiated so

>much.

>

>Leah, mom to 10yrs and Olivia 5.75yrs, 22lbs, 36 " , RSS, OI,

>mild kephosis, assemetry 1cm femur only, lots of meds.

>

September 10, 2005

Leah

Considering I am in the same boat as you now, mind you I am not convincing

the endo..........just the insurance company.....however what if we/you got

some of the current research that the US used to decide to do FDA approval

for GH for SGA and by result, RSS kids? Did you happen to pick up any

articles (really current ones) at the conference? I'm just wondering if you

said to her " I have done a lot of research and attended several conventions

in Chicago for RSS and it seems that the most successful course of treatment

is GH " . and then gave her 2 or 3 studies?? (any more and she would probably

not read them anyway).

Do you have any of those articles? I am so swamped here right now, I don't

have a chance to go through the list and/or see what I have already on hand.

I should start to pull that together for my insurance company.

That might be one way to start, lets see what the others say.

Deb

September 10, 2005

<<Considering I am in the same boat as you now, mind you I am not convincing

the endo..........just the insurance company.....however what if we/you got

some of the current research that the US used to decide to do FDA approval

for GH for SGA and by result, RSS kids? Did you happen to pick up any>>

I need this info too. I am fighting with my insurance company for Liam's GH.

They are trying to tell me he needs a stim test for them to approve it, and

that he is 2 standard deviations above the 3%.. Well, that is because he was

on GH for 1 1/2 years, before the GH he was 3 below!!!

Mom to Jed (1/22/93)

and Liam (12/12/00)

Orlando Fl

" When you get to your wit's end, you'll find God lives there. "

" Today I will not worry...unless I see animals lining up two by two. "

Family and Breeding Website

September 10, 2005

Hey Deb,

Great advice, I love your wording about attending the

conventions. Hopefully she'll be very responsive and there won't be

a hassle but I'd like to go in there with my " ducks in a row " . The

bad part of going to a teaching hospital is that the Dr's are used

to being the teachers and don't want to LEARN about new things!!

There also seems to be a big ego complex going on with our other

Dr's when I mention " the Dr in the States " , they quite shut down

after that! Ugg, cross your fingers it goes smooth!!!

Leah

> Leah

> Considering I am in the same boat as you now, mind you I am not

convincing

> the endo..........just the insurance company.....however what if

we/you got

> some of the current research that the US used to decide to do FDA

approval

> for GH for SGA and by result, RSS kids? Did you happen to pick up

any

> articles (really current ones) at the conference? I'm just

wondering if you

> said to her " I have done a lot of research and attended several

conventions

> in Chicago for RSS and it seems that the most successful course of

treatment

> is GH " . and then gave her 2 or 3 studies?? (any more and she would

probably

> not read them anyway).

> Do you have any of those articles? I am so swamped here right now,

I don't

> have a chance to go through the list and/or see what I have

already on hand.

> I should start to pull that together for my insurance company.

> That might be one way to start, lets see what the others say.

>

> Deb

September 10, 2005

hey leah!!

i dont know what you should say but wanted to let you know i am

thinking of you guys and will keep my fingers crossed for you on your

endo appt day!!

let us know how you make out and how olivia does with her testing!!

you may want to look into auditory processing disorder as well, this is

what we found nicholas has and at first we thought ADD. good luck!!

jodie c

September 11, 2005

Leah, what I wonder is why no physician is mentioning the father or

grandparents genes in all this? I'll bet it's incredibly

frustrating for you. My girlfriend is 4'6 " and her husband is 6'1 "

and their daughter is very tall. My 3 1/2 yr old (non-RSS) is

huge. But, my husband and I are not. My dh is only 5'10 " and I'm

only 5'6 " . My 3 1/2 is in the 97th percentile for height and

weight - he looks like he's 5 or 6. It's interesting because people

will comment on how big he is and say " his daddy must be tall " - of

course, my response is always " no " . But, I always add that my dad

is 6'4 " . So, everyone nods their heads and say - " oh, he must have

his grandfather's genes " . My point in all this is that whenever I

go to a physician I always bring up the size differences in

my " entire " family network because when people look at how thin I

am - they tend to want to say - Ian (RSS) will be thin as well

because of me. But, if you look at my husband's side of the family -

well, let's just say they have larger genes.

I don't know if my rambling helped - but, something to think about

when talking with your physicians.

- H

>

> Hey everyone,

>

> It's been forever since I've posted but I read all the posts.

> Olivia's doing ok latley, having more constipation problems but

> that's a never ending battle anyway.

> Her attitude is horrible, there's just no reasoning with her on

> anything. It's dissapointing that the 3yr old next door

understands

> directions better than my almost 6 yr old and doesn't tantrum like

> Olivia still does. Sigh, the school will be doing a full ADD/ADHD

> workup soon so that might lead to some answers.

>

> Now on to the Endo. Our Appt. isn't until Oct. 4 but I'm

> expecting a battle since little is known about RSS in Canada and

> they don't really see the need to treat it at all. Again it's

> harder for me since the Dr's keep saying " you're small so she'll

be

> small " I'm not quite 4'10 " but come on, I was never that small!

> For a quick comparason:

> Me age 5, 40 " 40lbs (yes I was a chunk, lol)

> Olivia age 5, 35 " , 18lbs

>

> Me age 6, 43 " 46lbs

> Olivia almost 6, 36 " 22lbs

> Basing it on this alone and we'll be lucky if she even reaches

4',

> not to mention all the other great benefits of GH.

>

> Thankfully my mom kept our growth chart from on the wall when I

> was growing up so I plotted all of MY charts to give to the Dr.

>

> I'm expecting the Endo to be non responsive to GHT so is there

> anyone else out there who was successful at convincing their " not

> willing " Endo?

> Again, I have no idea what she will say but I really want to be

> prepared for when the time comes! Anything will be apprectiated

so

> much.

>

> Leah, mom to 10yrs and Olivia 5.75yrs, 22lbs, 36 " , RSS, OI,

> mild kephosis, assemetry 1cm femur only, lots of meds.

September 11, 2005

Leah, You're 4'10 " In your picture of your " new haircut " I couldn't tell.

Since I haven't been to convention I never had the opportunity to meet you.

I hope everything goes well at the endo.

B

Leah wrote:

Hey everyone,

It's been forever since I've posted but I read all the posts.

Olivia's doing ok latley, having more constipation problems but

that's a never ending battle anyway.

Her attitude is horrible, there's just no reasoning with her on

anything. It's dissapointing that the 3yr old next door understands

directions better than my almost 6 yr old and doesn't tantrum like

Olivia still does. Sigh, the school will be doing a full ADD/ADHD

workup soon so that might lead to some answers.

Now on to the Endo. Our Appt. isn't until Oct. 4 but I'm

expecting a battle since little is known about RSS in Canada and

they don't really see the need to treat it at all. Again it's

harder for me since the Dr's keep saying " you're small so she'll be

small " I'm not quite 4'10 " but come on, I was never that small!

For a quick comparason:

Me age 5, 40 " 40lbs (yes I was a chunk, lol)

Olivia age 5, 35 " , 18lbs

Me age 6, 43 " 46lbs

Olivia almost 6, 36 " 22lbs

Basing it on this alone and we'll be lucky if she even reaches 4',

not to mention all the other great benefits of GH.

Thankfully my mom kept our growth chart from on the wall when I

was growing up so I plotted all of MY charts to give to the Dr.

I'm expecting the Endo to be non responsive to GHT so is there

anyone else out there who was successful at convincing their " not

willing " Endo?

Again, I have no idea what she will say but I really want to be

prepared for when the time comes! Anything will be apprectiated so

much.

Leah, mom to 10yrs and Olivia 5.75yrs, 22lbs, 36 " , RSS, OI,

mild kephosis, assemetry 1cm femur only, lots of meds.

September 11, 2005

<<Again it's

harder for me since the Dr's keep saying " you're small so she'll be

small " >>

My friend who's son is Growth Hormone deficient got this ALL the time. Well,

she decided to get tested for GHD and she is growth hormone deficient, so

she went back to the doctor with her results and said " okay if he is small

because I am small then he is growth hormone deficient, cause I am " They

tested him and sure enough he is... Sad thing is it took so long with

fighting the doctors , that he does not have too much time left to grow....

Mom to Jed (1/22/93)

and Liam (12/12/00)

Orlando Fl

" When you get to your wit's end, you'll find God lives there. "

" Today I will not worry...unless I see animals lining up two by two. "

Family and Breeding Website

September 11, 2005

Leah

I have the same problem here, now you don't have to listen to me, but I

tried once to say 'Dr. H in New York told me I should.........' and the

doctor shut down on me. Now I use Dr. H's advice but supply it to my doctors

like " I was reading that some people.......... " bla bla bla. That seems to