Re: Olivia's Endo Appt. Long-->Deb

[Guest guest]

Hey Deb,

Yep, I got the e-mail and I'll be sending the letter by Monday at

the latest.

I can't say enough how much this means to us for you to provide

all of this help!

Big Hugs!!

And I'll scream for you also about Adam's teacher! This is just

unbelievable! Good luck with the letter for your principal, I hope

everything works out!

Leah

> Hi Leah

> I love your exclamation points. And now that I have my own again

(watch this

> !!!!!!!!!!!!!!!---got an old keyboard from work today).......

> Anyway, I will not rest until Olivia has GH. And yes we have our

game plan.

> Did you get my email of the doctor's address etc etc.?

> Let me know as you make your connections and we will make our

plans. Even if

> you guys have to come and live with me here in Toronto, you are

going to get

> this!!!

>

> Keep in touch

>

> Deb

>

> Olivia's Endo Appt. Long

>

>

> >

> >

> > Hey everyone!

> >

> > Sorry if I worried anyone about Olivia and the bad Endo appt.

> > She's doing just great, it's the Endo that I'd like to

> > throttle!!!!!!!!!!!!!!!!!!!!! (my turn with the exclamation

marks!)

> >

> > I should start by saying in Canada the rules are a bit

different

> > in that GH is only Rx'd for GHD and 's syndrome so we have

an

> > uphill battle from the start in this area. I was very well

prepared

> > for the appt. (thanks to MAGIC, the conventions and all of YOU!)

and

> > I had a quick concise answer to all of the Dr's questions. The

> > problem was that she had " The Smirk " on her face that said she

> > didn't believe a damn word I said about RSS, GHT, bone age,

ANYTHING.

> >

> > Again it came down to the fact that I'm small, 4'9 " , so she's

> > going to be small too. She asked if my mom commented on how

small I

> > was as a child so I pulled out MY growth charts to show her that

> > although small I was still ON the growth charts and very chubby,

> > 90th %ile for weight!

> > I should also mention she's (the endo) not convinced Olivia has

> > RSS at all, she thinks it's just the OI. Since my hubby, his

mom,

> > his sister and her daughter all have OI she asked about their

> > sizes. Well everyone in their family is huge, 5'10 " - over 6' so

> > yes the OI made them shorter. His mom and sister are also 4' 9 " .

> > However they aren't exactly slight people, both having weight

issues

> > all their lives. Well then she want's to know the size of our

niece

> > with OI. I laughed! Sure she's short for her age but at almost

3

> > years old she's only 2 inches shorter than Olivia (almost 6) and

is

> > 12lbs HEAVIER.

> >

> > She finally asked where I'd gotten my info from, so I told

about

> > going to Conventions and all the Dr's volunteering (sp) their

time,

> > etc. and she said " well you know that RSS kids don't respond to

GH

> > anyway " I begged to differ and got " The Smirk " yet again.

> > She had no value at all for the efforts and the huge strides

that

> > Dr's of other countries are making, I even pumped up Dr. Stanhope

> > since he's British to no avail.

> > She also seems to think that Olivia's growth velocity is

> > acceptable. Maybe I should have given her glasses, 3 year olds

> > notice that she's different!!

> >

> > The big one for me was about bone age. It really showed me

that

> > this Dr know's NOTHING about RSS!! She said " There's no panic or

> > rush at all since Olivia's very young only 5yrs 10mths, we have

> > until she's 9 to start GHT if that's what you really want to

do. " I

> > said " I think that's a bit too late since their bone age will

> > surpass their chronological once puberty begins, the bones will

fuse

> > early and growing will be finished "

> > She LAUGHED and said " That never happens and even if it did, it

> > would take years, with Olivia's delay in bone age she should grow

> > until she's 17 " Again I said " not with these kids " and just left

> > it.

> > Her game plan is to check Olivia's IGF-1 and something else

right

> > now to get a " baseline " (ridiculous since she's had this several

> > times and has a well established base line). Then in 6 months

we'll

> > go back for a stim test then 6 months after that possibly

consider a

> > 1 year trial to see how Olivia does. Considering all of this and

> > including the insurance fight to cover it we're looking at well

over

> > a year just so the endo can " think about it " . (Because we have

until

> > she's 9 right?? UGG)

> > She's obviously brushing us off and wanting to keep pushing it

> > back so I'll just give up on it. WELL she's doesn't know this

Momma

> > very well at all, HA!

> > Even though she refuted everything I said, I was kind and

polite

> > and agreed whole heartedly with the game plan just so I won't get

> > black listed there.

> >

> > MY game plan is totally different, haha. Thanks to all the

help

> > from Debby B. (thanks Deb!) we're going to get in touch with a

> > different Dr. If he doesn't know anyone in my province who can

help

> > then we might be off to Ontario if he'll see us.

> >

> > Anyway, that was some of our Bad Endo appt, sorry it got so

long

> > (and this is the condensed version!) Thanks for letting me

vent!!

> >

> > Leah mom to 10 years and

> > Olivia 5.75 years, 22lbs, 36 " , RSS, OI

> >

> >

> >

> >

> >

> >

> >

> >

> >