Re: Olivia's Endo Appt. Long

[Guest guest]

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

>

>

>

>

>

>

>

>

>

[Guest guest]

Oh my Leah! Are you out west? Oh man I can't believe that! I'm

glad you talked to Debby and hopefully you'll get a new doc out there

and not have to go to TO, but whatever has to be done! Like you ...

I'm going prepared to the endo and hope against hope I don't get that

kind of response. GOOD LUCK with a new one ... ditch that one

quick ... too much attitude.

Dawna

>

>

> 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

[Guest guest]

Leah,

Your endo and our GI team need to get together. They seem to have an

attitude problem. The only difference is that our GI team used to

listen. Now they just look down at us as if we don't know anything.

WRONG! I knew Max needed Zelnorm almost 3 weeks before they agreed to

start him on it. But what do I know? I'm just a mom.

Keep up that spirit. You know we are all behind you. Look at what

Shedon and did for Laikyn. Look at what Debby went through

for Adam. You will get Olivia what she needs. I know you will.

Please keep us posted.

Jodi Z

[Guest guest]

Very glad Olivia is doing okay! OMG I would have wanted to do the

same. I HATE when the doctors think they are smarter than you and

say such STUPID things and with SUCH attiudes!!! I am so fortunate

that I live near Boston and so many doctors but I have never had to

switch a doctor - they actually listen to me and answer my questions

and ask what I think!

I have one pedi at the office we go to taht we see that just refuses

to believe that kids can present differently. Emerence will go go go

even if she is really sick. When they admitted her to the hospital

and gave her some fluids and D5 she was up and at em after an hour

with only 5 hours sleep and instisted on pushing her own IV pole!

She has ear tubes but she presents an impending ear infection by

gagging all day for no reason and then throwing up within 2 hours of

going to bed. Even though her ENT thinks it is weird she totally

accpets it. I HATE when doctors keep telling me " just look at her,

you'll know when she is really sick " . DUH, I LIVE with this kid and

if she looks sick (almost never) we have some really scary problems

on our hands. She can be really sick and still great looking.

HHMM< I know some of our kids are super energentic - is ther anyone

else whose kid looks fine when sick?

Leah, good luck finding a new endo because this one is ill-informed,

rude and just plain stupid and suffering from the " I am holier than

thou because I went to medical school " attitude....

megan, mom to and Emerence

>

>

> 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

[Guest guest]

Leah, I am SOOOO proud of you!!! You were so educated and you knew

your stuff. That is why you could recognize the ignorance in this

doctor. I am really proud of you for not totally losing your cool.

I am not sure if the doctor Deb knows is the hospital that several

of the Canadian families are heading to? One Canadian family drove

24 hours to get to it? Seems that this hospital is authorizing GH

for RSS/SGA kids pretty readily compared to anywhere else? I am

guessing you talked to the other Canadian families at the

convention. If you have no idea what I am talking about, right me

privately and I will answer you next Monday.

Again, great job! Salem

>

>

> 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

[Guest guest]

oh leah!!

that sucks!! but atleast you were so well prepared when you went there

and now have a game plan to fight for olivia's right to grow!!

hopefully with deb's help you can get this moving!! how did her OI

treatment go this last time? hang in there and good luck!! let us know

how it goes!! ((HUGS))

jodie c

[Guest guest]

Leah,

I am sorry you had such an awful experience. I can't believe that

doctor. She obviously knows NOTHING about RSS. Had she even heard

of it? My gosh! I am so glad you hooked up with Debby and that you

guys will be fighting for Olivia's rights. I hope you get the

results she needs. Please keep us updated on EVERYTHING!

Thinking about you,

Jodi R.

>

>

> 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

[Guest guest]

Hey Leah,

That sounds so frustrating.....don't you hate it when you know that

you know way more than they do and all they keep thinking is " don't

they know I'm the DR here " I live in Canada too, Ontario actually

and I go for my endo appointment in 12 days. We have only seen this

DR. in hospital when Josiah was diagnosed with RSS in July 05, but at

that point he said that Josiah would be a great candidate for GH and

that he would help us find someone to pay for it. I just assumed

this was the norm for everyone and I will be more grateful that it

won't be such a fight. It sounds like Deb has you all taken care of

I am guessing at sick kids in toronto.....good luck with it all and

keep us posted.

R.

Canadian Mom to Josiah 28 months RSS NG tube

> 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

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Debby,

I just wanted to tell you how awesome you are for supporting Leah and

helping her through this. It is so great that we have such wonderful

and supportive people who are memebers of this group. How

inspiring. I know you think nothing of it, but I am sure that it

means the world to Leah, and it so touches my heart too.

Hugs,

Jodi R.

> 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

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Oh leah - I'm so sorry for your troubles. My heart poors out to

you. My mouth about dropped to the floor as I was reading your

post. You handled yourself much better than I would have - the

Endo's non-compliance and lack of knowledge and sensitivity are

completely unacceptable. I pray you will have an opportunity to

make connections with another physician and I'm so glad that Deb was

able to assist you in your search for someone better. Best of luck

to you - Hugs.

- H

>

>

> 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

[Guest guest]

Thanks Jodi

I think I really needed to hear that right now as I cry in my exclamation

marks. It's just too much some days what we have to deal with. LOOK at what

poor Jodi is going through, why the & ^ & ^ & does it have to be a FIGHT all the

time?????

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

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >