Olivia's Endo Appt. Long

[Guest guest]

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