Re:Leah from Charlene - endo/real long/ Charlene

[Guest guest]

Charlene,

You sound like me with Eva.

I am the same way. We fortunately live in a small town where everyone knows

Eva. Can't go to the store w/o someone stopping us. Tht has helped when it

comes to going to the ER and Dr. She is kinda a exhibit becuase they have never

seen anyone here like her. she was one of the first preemies that survived in

our area that had been born so early. because of her our ER now has equipment

that can handle 3 pounders. We don't have a NICU but a baby born here now has a

chance at survival till the stat flight from Kosair's get here to take them to

Louisville.

I urge all parents to jump up and down , stomp your feet , scream, pull your

hair out or whatever it takes to get the job done. You are the one who has the

ultimate say in your baby's life. Not the Dr. In the world of sales they say

it takes 10 no's to get a yes. I beliveve that to be true in most anything. So

perservere. If you don't like the way a Dr. is go over his head. I have gone so

far as to phisically stop the moving of Eva from one hospital to another. We

mom;s are like Mama Bears. Don't mess with our babys.

am glad to see that you are so proactive. i think that more could learn from

you.

Keep it up Mom!

Donna, Mommuy to Eva G. RSS/GHD, 6.11 yrs, 32lbs, 39ins.

Jad 17, ODD/Bi-polar, Jasmin,12,ADHD, Mikey 4, ADHD poss. autism

re_1wiily wrote:

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

> > >

> >

> >

> >

> >

> >

> >

> >