Re: Re: Leah chat--> Deb. B

[Guest guest]

Hi Leah

Well it may be a dry reply from Dr D but it's still longer than a line or two

that some people get from their endo!!

So I guess that is where you are stuck now? Have you ever seen this Dr. P? You

know what I read from this, if you get no where with Dr. P. AND you can get the

GH cost covered he would be willing to see you. He never said no, just to go the

route of Dr. P., and before you go through the expense of traveling to TO, make

sure you can pay for the GH. Not bad. At least he responded!! LOL

The way I see it for you (and I am trying to find some sort of silver lining for

you!! LOL) is that if all else fails for you, it looks like the door is still

open if you can get to TO. Keep the faith Leah! We shall over come!!!

Deb

Re: Leah chat--> Deb. B

Hey there Deb,

I copied and pasted Dr. D's e-mail and it's not very exciting, lol!

I was hoping since both of their names are french that she'd be

more open to treatment so I guess I'll just have to keep e-mailing

and play the waiting game. I don't see Olivia reaching 4' on her

own without GHT, especially since her TARGET height is only 4'10 " .

For some reason the endo's here think that will still be her final

height because it's her target, ugh! They just don't want to learn

about RSS. I even brought in both mine and my older daughters

weight and growth charts from birth and it made no difference. Very

frustrating again but as I've said before, we'll just keep plodding

along!

As for contacting Dr.H, it wouldn't be for a script or an appt,

just for help in how to talk to the Dr's here. I suppose it

couldn't hurt.

We so appreciate all of your help and the offer of your home as

well, we will definatly take you up on it if this journey takes us

to T.O.!

Leah, mom to almost 11 and

Olivia 6yrs, 23lbs, 36 " , RSS, OI

Here's the letter....

Dr. e Pacaud is Head of the Division of Endocrinology at

Alberta

Children's Hospital. Below is her contact information. You may wish

to

contact her first before considering a trip to Toronto. Please also

be

aware that Silver Syndrome is not an approved indication for

GH nor

is there government coverage for tis medication in this situation.

This

will pose significant potential barriers to obtaining GH in Ontario

unless

your insurance company is willing to cover it.

I will wait to hear further from you.

Best wishes;

> > >

> > > Oh, how I wish I had known to tape this!!!

> > > Discovery Health and The Learning Channel showed an

amazing

> > program

> > > following a family of 5, with both parents being

> achondroplasic

> > > dwarfs.

> > >

> > > Here's a link from the production company:

> > > http://www.advancedmedical.tv/shows/mtf.htm#synapsis

> > >

> > > The program was absolutely, postively inspiring, funny,

and

> > practical

> > > too! Here's a quote from the promo:

> > > " It will introduce viewers to a family that faces

challenges

> head-

> > on,

> > > challenges that any average-sized family would find

difficult

> to

> > > manage. We'll witness their daily struggle to fit into a

world

> > that

> > > isn't built to fit them, and their amazing resolve to make

> their

> > > lives as normal as possible. Whatever preconceived notions

> that

> > exist

> > > about dwarfs will be quickly forgotten upon meeting the

Foos.

> > Because

> > > in the case of the Foos, it's not their first impression

> they're

> > > concerned with, it's their lasting impression. "

> > >

> > > IT also included a nice little segment about how

meaningful

> the

> > > annual LPA Convention (Little People of America) is to the

> > family.

> > > Reminded me a lot of what the MAGIC Convention means to

our

> > RSS/SGA

> > > families.

> > >

> > > I have NO idea when or if it will air again, but perhaps

you

> > Googlers

> > > out there can find more info.

> > >

> > > Enjoy!

> > > kATY

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

leah,

i was reading your post and my heart just ackes for you and olivia. that

girl has so much heart and soul. i remember how happy you were at the end of the

convention last year and to be able to take this back to your doc and to get no

help there must truly be heart braking. i wish i could help you all. give olivia

the best hug from us. over all how is she doing i hope well. miss chatting to

you hope you are heling well too

hugs cara mom to jacob

Leah wrote:

Hi Deb,

Yep, Dr.D e-mailed me the moment he was back from holidays but

it's a whole other issue here. After several e-mails and phone

calls I've gotten NO response from the endo here. And the secretary

said her wait list is over 6 months. I've tried calling other endos

to " interview " them on the phone so I don't have to waste my time

waiting for an unproductive appt., also to no avail.

You know, not only do I feel Olivia's being left behind, I feel

she's being swept under the rug. I get so very frustrated in going

to the convention to see everything there is to be done and see how

wonderful the kids are doing there just to have it all dangled in my

face. Don't get me wrong (especially for you new parents who've

never been!!!!) We would do ANYTHING to go to the convention EVERY

year even if it means getting a loan or remortgaging the house

(which we won't have to do). We love it there and CHERISH our only

weekend of " normal " every year. However it feels like a big tease

once we get back to Canada and the Dr's are so ignorant.

I'm saddened when there are kids here bigger than Olivia that get

g-tubes and GHT, not that I want her to have a g-tube but how else

will we get her to grow? I do understand that every child is

different and treatment is therefore different but why do I have to

wait until she is is emaciated to get care or concern.

Sorry this is turning into a vent but I'm so very frustrated and

it's not in our budget to go to both the convention and TO in the

same year. We don't want to miss the convention for anything. We

would also have to contact our insurance and see if they will cover

GHT script from out of province before we went.

I've thought of e-mailing Dr. H and seeing if she has any insight

for me but I don't think there's anything she could do considering

the logistics...

Chat more soon,

Leah

> >

> > Oh, how I wish I had known to tape this!!!

> > Discovery Health and The Learning Channel showed an amazing

> program

> > following a family of 5, with both parents being

achondroplasic

> > dwarfs.

> >

> > Here's a link from the production company:

> > http://www.advancedmedical.tv/shows/mtf.htm#synapsis

> >

> > The program was absolutely, postively inspiring, funny, and

> practical

> > too! Here's a quote from the promo:

> > " It will introduce viewers to a family that faces challenges

head-

> on,

> > challenges that any average-sized family would find difficult

to

> > manage. We'll witness their daily struggle to fit into a world

> that

> > isn't built to fit them, and their amazing resolve to make

their

> > lives as normal as possible. Whatever preconceived notions

that

> exist

> > about dwarfs will be quickly forgotten upon meeting the Foos.

> Because

> > in the case of the Foos, it's not their first impression

they're

> > concerned with, it's their lasting impression. "

> >

> > IT also included a nice little segment about how meaningful

the

> > annual LPA Convention (Little People of America) is to the

> family.

> > Reminded me a lot of what the MAGIC Convention means to our

> RSS/SGA

> > families.

> >

> > I have NO idea when or if it will air again, but perhaps you

> Googlers

> > out there can find more info.

> >

> > Enjoy!

> > kATY

> >

>

>

>

>

>

>

>