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

[Guest guest]

Hi ,

Hopefully everything will go smoothly for you and Josiah (love

his name!). I'm really hoping to find someone in Alberta but I'll

go to TO in a heart beat if that what it takes!

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

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >