Re:Leah from Charlene - endo/real long

[Guest guest]

Hi Leah I read your chat to Deb regarding endo and doc support in

Canada (as you know I'm just down the road from Toronto). We alsoo

go to sick kids and see Dr. D. He had a very wait and see attitude

when it came to . This frustrated me so much until I started

coming into this site and through discussion with Debbie and others

have figured that here that attitude prevails in the medical

community. Dr. D told us that because has no weight to

height disparity there is no endo. issues that he can ascertain at

the time. We see him again in March and I'm pretty sure it will be

the same party line. That being said we have had tremendous support

from our genetisist, although only during yearly consults. I had a

fabulous ped. but he quit office hours because of busy hospital

hours and the only other ped. in our area is a, for lack of a better

word, MORON WITH A GOD COMPLEX. He is the one who told me that it

was a caloric issue - no duh - and because he never heard of RSS, it

couldn't be that big a deal. HMMMMM! Imagine how I responded to

him, standing there with my portfolio full of stuff from docs,

specialists, all ackwoledging issues go well beyond

calories. He did't care. So I feel your pain with ignorant docs

who don't want to do anything to help. Earlier I refered to my self

as the 'squeaky wheel'; it's more like nails on a chalkboard until I

get what I want. We went through a period where Will's immune

system was pretty compromised and he had infection after infection,

with no known source. He would get so sick so fast that dehydration

would set in and it was pretty scary - I don't tell you this to

scare you - just to give an example of how I made people listen to

me where Will's needs were concerned. I'd decided that it was in

his best interest to act on illness and be proactive by getting him

onto IV fluids, etc. before it got to the point of dehydration, so

first sign of things going down that way I'd go to emerg. only to be

told he's sick, take him home and deal with it. I'd explain about

RSS the recent experiences (at the same hospital, same symptoms,

etc.) and they wouldn't hear about it - don't know RSS - must not

exist. One time I was sent away and then ended up back two hours

later, demanded I see the pediatrician - who got upset with me

because 'I left it too late' and they couldn't find a vein. I lost

it and went up one side of him and down the other, by the time I

left and went up to the ward where stayed for a whole week -

I got a standing order on his chart that if mom wants IV for Will-

mom gets IV for Will. I have only once since had to use this but

that was my turning point. I went to my family doctor after that

and basically talked this poor overworked guy, who is amazing to us,

to let me call all the shots where Will is concerned. If we feel he

needs something my doctor will and has since made sure we got it -

but I had to turn into a real witch at one time to get to that

point. No regrets! Keep advocating - you will ultimately be the

best one for your child!

Charlene

> > >

> > > 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]

Hi Charlene,

Just wanting to clarify what this means...

<because has no weight to height disparity >

Does it mean that he's too underweight to start GHT or that he's a

proper weight for height so let him grow on his own for now.

Gulp, I feel like an idiot for asking that but it's a concern of

mine as well. I don't know if they'd start Olivia on GHT anyway

because she is so underweight, she's about 3-4 boxes below the 3rd%

ile line on the height for weight charts (I forget if that's

standard deviations or what) but it looks to be about the minus 50th%

ile.

I just can't get anymore weight on her and believe me this kid can

eat like a horse when she want's too!! She's always hungry and even

if she only has a few bites she still says " That was the best supper

ever! " , she's quite the character!

As for hospital visits we have a great ER in the town closest to

us and they fully admit that they've never heard of RSS. I always

bring my MAGIC folder with all of the pertinent info and they always

say the same thing... You obviously know more than I do. What's

the treatment. For how long... etc. I thank God that we're from a

small community and we don't have too much of the hot shot Dr's at

the local ER! Now it's in her charts and it's just protocol.

Chat 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

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Sorry Leah - I write like I talk - long winded and never really to

the point - LOL. We understand that 's weight and height are

approximately in the same percentile on the growth charts and

therefore there is no disparity. It is a wait and see how he grows

and since he is growing on his own curve on the chart Dr. D. doesn't

seem to be in a hurry to do anything about growth hormone. When

was much younger this was not the case though and

the 'disparity' was present; He was way too thin/underweight for

his height - he was off the charts. We refer jokingly to it as his

negative period. With the help of an NG tube and pediasure we ended

up getting his weight up and there has been some consistency here

since;Although he has not gained an ounce in the past 6-8 months nor

has he grown in height during this period (our current concern -

maybe someone out there understands this?) I LOL when I read about

Olivia's appetite - I've always had a hard time explaining the way

relates to food and it seems that maybe they are similar.

loves to eat and will eat what he wants when he wants but

again it is always in ridiculously small ammounts (if he grazes all

day).Or he'll eat two bowls of cereal in the morning and pretty much

nothing else all day - it just depends. He uses the word 'hungry'

but I'm not convinced he really understands it in a conventional way

(I'm not even sure I can define what I mean by this). He also has a

secretion issue - in that he passes very quickly and thoroughly what

he eats - there is a malabsorption issue that has never been fully

understood. I would love to hear more about Olivia - she sounds

very cute.

Charlene, mom to , 4 years

In RSS-Support , " Leah " wrote:

>

> Hi Charlene,

> Just wanting to clarify what this means...

> <because has no weight to height disparity >

> Does it mean that he's too underweight to start GHT or that he's a

> proper weight for height so let him grow on his own for now.

> Gulp, I feel like an idiot for asking that but it's a concern of

> mine as well. I don't know if they'd start Olivia on GHT anyway

> because she is so underweight, she's about 3-4 boxes below the 3rd%

> ile line on the height for weight charts (I forget if that's

> standard deviations or what) but it looks to be about the minus

50th%

> ile.

> I just can't get anymore weight on her and believe me this kid

can

> eat like a horse when she want's too!! She's always hungry and

even

> if she only has a few bites she still says " That was the best

supper

> ever! " , she's quite the character!

>

> As for hospital visits we have a great ER in the town closest to

> us and they fully admit that they've never heard of RSS. I always

> bring my MAGIC folder with all of the pertinent info and they

always

> say the same thing... You obviously know more than I do. What's

> the treatment. For how long... etc. I thank God that we're from a

> small community and we don't have too much of the hot shot Dr's at

> the local ER! Now it's in her charts and it's just protocol.

>

> Chat 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

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >