Re: HELP! i'm going crazy w/ drs.

[Guest guest]

Have you ever checked out the list of characteristics on the MAGIC webpage? I

was having a horrible time, too, with Tim having an ng tube out of the hospital

which they wanted him at 150 kcal/kg/day for 'catch-up', and he would poop

constantly and vomit when we touched his mouth for the NEXT feeding 3 hrs

later... RSS is a 'best fit' of a collection of symptoms without a genetic

test. Finally, I pointed out that he had one leg skinnier than the other, and

that cinched the diagnosis and the geneticist called off all the other

specialists who were making me torture Tim with way too much food (he still

needs a lot and has a g-tube now, but this was ridiculous!). You may want to

check it out, and know that you are not alone - RSS moms have been accused of

lots of garbage and mis-led a lot. Yet this support group is an excellent help

in both understanding RSS better and being able to TEACH the doctors about

it!!!

A list of symptoms is at:

http://www.magicfoundation.org/rss.html

Inga

At 07:57 PM 6/30/2002 -0700, you wrote:

>

> it's been a while since i gave any update on eva. and now i need to vent and

> ask for opinions. hi everybody. oh dear i'm already off track. my brain has

> turned to melted jello-o after the last 2 weeks. on monday 2weeks ago i

> recieve a urgent phone call from eva's ped. she wanted her in indy the next

> morning to be admitted for developmental peds to have a go at her. WHY IS SHE

> NOT GAINING WEIGHT! ok she has now reached 31in. but still tips the scales at

> 17'7. endo says this is fine. d. peds and genetics says it isn't. so after

> rearranging my lfe and every one i work w/ and fighting w/ dad. we made it.

> first thing they did was take her bottle away from her and then tell her she

> had to drink more pedisure. up from 2cans to 4. great. you just took away the

> only way we could get her to take it anyway. she also got a temp of 105 w/

> tonsillitis right after our arrival.so the games began. eva dropped nearly az

> pound in 2 days before she decided to eat and drink again. t! hey did a upper

> gi and asorbtion study whwich all came out fine. she was npo for over 12hrs.

> i was not happy. they are doing more genetic test looking at the bottom of

> the cromosones.we had every dr. w/ every possible letter in the alphabet

> after thier name and students too since we were in riley's. right in the

> heart of i.u.'s medical campus. after a week and a half they let her come

> home w/ no new info. they know it's genetic but they don't have a name for it

> yet. meanwhile dad is wanting to take me back to court to get sole custody

> because he swears there is nothing wrong w/ her. we have joint now w/ her and

> her brother being a week w/ him and a week w/ me. drs. have told him this is

> part of her problem. now we get to go see a psychiatrst. i need one after all

> of this. they still want to do a g-tube. arrrrrgh! ok i think i'm done now

> just needed to vent. how do i get on to the chat room i can't figure it

> out. thanks for listening, donna garlinghouse mom ! to eva 3yrs 3mos and

> mikey,1yr,non-rss,jad13yrs,and jasmin 8yrs,also non-rss

>

> p.s. they aren't sure eva is rss. somebody

>

> make upmy mind please

>

>

>

> ---------------------------------

>

[Guest guest]

Eva - Whoever says that it is OK for a 3-yr old to weigh 17 lbs is

full of horse manure. Are they crazy? OK, I got that out of my

system.

Second of all, whoever thought that it was acceptable to take a 17lb

3-yr old and keep them NPO for more than 12 hours??? That is SOO

dangerous. A child that size should NEVER be kept NPO for more than

4 hours at a time.

Are you still a member of MAGIC? If so, please, call MAGIC at 800-

3MAGIC3 and ask them for document #127-R. This is a letter that Dr.

Harbison wrote for parents of RSS infants, but it applies for all of

us. It explains in one part about never keeping a child NPO for more

than 4 hours and what to do if they need to (IV). The blue RSS

brochure from MAGIC (the new one that came out in March) also has

this information.

Yes, indeed, part of her weight problem may indeed be exacerbated

from going back and forth from Mom and Dad's. But lots of kids do

that and they dont' weigh 17 lbs. It can be exacerbated when two

parents not living together don't agree on the " treatment " to take.

For example, your daughter should be eating literally every 90

minutes or so, preferably high dairy and complex carbos. Little

crackers with peanut butter, chips, yogurt, cheese sticks. Give milk

with pediasure in between snacks, so she doesn't fill up on the

milk. But if you do this, but then her dad doesn't follow this...

you see where I am going. The two of you have to be on the same

page. In that sense, a g-tube may solve the problem because the

feeding would be managed....

I know when we talked a year ago, you had a lot on your plate. Do

you still live in Indiana? I wish we could get you to the convention

to see dr. H. Maybe I can ask around some of the MAGIC RSS parents

that live in your area and find out what good doctors they use.

Does your ex truly think that there is no problem with her weight?

And that nothing " special " needs to be done? Let us know. Thinking

of you -

>

> it's been a while since i gave any update on eva. and now i need

to vent and ask for opinions. hi everybody. oh dear i'm already off

track. my brain has turned to melted jello-o after the last 2 weeks.

on monday 2weeks ago i recieve a urgent phone call from eva's ped.

she wanted her in indy the next morning to be admitted for

developmental peds to have a go at her. WHY IS SHE NOT GAINING

WEIGHT! ok she has now reached 31in. but still tips the scales at

17'7. endo says this is fine. d. peds and genetics says it isn't. so

after rearranging my lfe and every one i work w/ and fighting w/ dad.

we made it. first thing they did was take her bottle away from her

and then tell her she had to drink more pedisure. up from 2cans to 4.

great. you just took away the only way we could get her to take it

anyway. she also got a temp of 105 w/ tonsillitis right after our

arrival.so the games began. eva dropped nearly az pound in 2 days

before she decided to eat and drink again. they did a upper gi and

asorbtion study whwich all came out fine. she was npo for over 12hrs.

i was not happy. they are doing more genetic test looking at the

bottom of the cromosones.we had every dr. w/ every possible letter in

the alphabet after thier name and students too since we were in

riley's. right in the heart of i.u.'s medical campus. after a week

and a half they let her come home w/ no new info. they know it's

genetic but they don't have a name for it yet. meanwhile dad is

wanting to take me back to court to get sole custody because he

swears there is nothing wrong w/ her. we have joint now w/ her and

her brother being a week w/ him and a week w/ me. drs. have told him

this is part of her problem. now we get to go see a psychiatrst. i

need one after all of this. they still want to do a g-tube. arrrrrgh!

ok i think i'm done now just needed to vent. how do i get on to the

chat room i can't figure it out. thanks for listening, donna

garlinghouse mom to eva 3yrs 3mos and mikey,1yr,non-rss,jad13yrs,and

jasmin 8yrs,also non-rss

>

> p.s. they aren't sure eva is rss. somebody

>

> make upmy mind please

>

>

>

> ---------------------------------

>

[Guest guest]

I can understand how you feel. I am lost also. I have an appt with the endo

and nutritionist and still don't believe I'll have any answers. Well just

thought I'd tell you I am pissed also.

Marla Eckert

HELP! i'm going crazy w/ drs.

it's been a while since i gave any update on eva. and now i need to vent and

ask for opinions. hi everybody. oh dear i'm already off track. my brain has

turned to melted jello-o after the last 2 weeks. on monday 2weeks ago i

recieve a urgent phone call from eva's ped. she wanted her in indy the next

morning to be admitted for developmental peds to have a go at her. WHY IS SHE

NOT GAINING WEIGHT! ok she has now reached 31in. but still tips the scales at

17'7. endo says this is fine. d. peds and genetics says it isn't. so after

rearranging my lfe and every one i work w/ and fighting w/ dad. we made it.

first thing they did was take her bottle away from her and then tell her she had

to drink more pedisure. up from 2cans to 4. great. you just took away the only

way we could get her to take it anyway. she also got a temp of 105 w/

tonsillitis right after our arrival.so the games began. eva dropped nearly az

pound in 2 days before she decided to eat and drink again. t! hey did a upper gi

and asorbtion study whwich all came out fine. she was npo for over 12hrs. i was

not happy. they are doing more genetic test looking at the bottom of the

cromosones.we had every dr. w/ every possible letter in the alphabet after thier

name and students too since we were in riley's. right in the heart of i.u.'s

medical campus. after a week and a half they let her come home w/ no new info.

they know it's genetic but they don't have a name for it yet. meanwhile dad is

wanting to take me back to court to get sole custody because he swears there is

nothing wrong w/ her. we have joint now w/ her and her brother being a week w/

him and a week w/ me. drs. have told him this is part of her problem. now we get

to go see a psychiatrst. i need one after all of this. they still want to do a

g-tube. arrrrrgh! ok i think i'm done now just needed to vent. how do i get on

to the chat room i can't figure it out. thanks for listening, donna

garlinghouse mom ! to eva 3yrs 3mos and mikey,1yr,non-rss,jad13yrs,and jasmin

8yrs,also non-rss

p.s. they aren't sure eva is rss. somebody

make upmy mind please

---------------------------------

[Guest guest]

May I just say " ditto " . Rosemarie doesn't even have RSS (or so we

think, we don't know WHAT the heck she has!) and I am a bit disconcerted

by all the specialists finding comfort in the fact that she is seeing

other specialists (as in " oh, that is good, you are seeing a

neurologist " , and then you go to the neurologist and he says " oh, that

is good you are seeing an endocrinologist " and so on...)

I wish I had answers for both of you. (I wish I had answers for myself

and my Rosemarie)

Jeanne

marla eckert wrote:

>

> I can understand how you feel. I am lost also. I have an appt with

> the endo and nutritionist and still don't believe I'll have any

> answers. Well just thought I'd tell you I am pissed also.

> Marla Eckert

> HELP! i'm going crazy w/ drs.

>

> it's been a while since i gave any update on eva. and now i need to

> vent and ask for opinions. hi everybody. oh dear i'm already off

> track. my brain has turned to melted jello-o after the last 2 weeks.

> on monday 2weeks ago i recieve a urgent phone call from eva's ped.

> she wanted her in indy the next morning to be admitted for

> developmental peds to have a go at her. WHY IS SHE NOT GAINING WEIGHT!

> ok she has now reached 31in. but still tips the scales at 17'7. endo

> says this is fine. d. peds and genetics says it isn't. so after

> rearranging my lfe and every one i work w/ and fighting w/ dad. we

> made it. first thing they did was take her bottle away from her and

> then tell her she had to drink more pedisure. up from 2cans to 4.

> great. you just took away the only way we could get her to take it

> anyway. she also got a temp of 105 w/ tonsillitis right after our

> arrival.so the games began. eva dropped nearly az pound in 2 days

> before she decided to eat and drink again. t! hey did a upper gi and

> asorbtion study whwich all came out fine. she was npo for over 12hrs.

> i was not happy. they are doing more genetic test looking at the

> bottom of the cromosones.we had every dr. w/ every possible letter in

> the alphabet after thier name and students too since we were in

> riley's. right in the heart of i.u.'s medical campus. after a week and

> a half they let her come home w/ no new info. they know it's genetic

> but they don't have a name for it yet. meanwhile dad is wanting to

> take me back to court to get sole custody because he swears there is

> nothing wrong w/ her. we have joint now w/ her and her brother being a

> week w/ him and a week w/ me. drs. have told him this is part of her

> problem. now we get to go see a psychiatrst. i need one after all of

> this. they still want to do a g-tube. arrrrrgh! ok i think i'm done

> now just needed to vent. how do i get on to the chat room i can't

> figure it out. thanks for listening, donna garlinghouse mom ! to

> eva 3yrs 3mos and mikey,1yr,non-rss,jad13yrs,and jasmin 8yrs,also

> non-rss

>

> p.s. they aren't sure eva is rss. somebody

>

> make upmy mind please

>

> ---------------------------------

>