Sherry

[Guest guest]

Hi Sara,

dh just stopped by tho SS office to pick up an application.( took an HOUR just

to ask for one :-( Our medwaiver coordinator told us to do so......Do you know

if it can be submitted before the 18th birthday or do we have to wait till Jan

7? I asked her about the IQ test and she told me that because s primary dx

listed on medwaiver is " Autism " not DS she would not ever need an IQ test. I

need to check this out further. I do have her ped who's had her since age 2 who

could write something to the effect that she will always need help and I wrote

to our So FL Autism group to see what they knew about IQ tests but no response

so far. I can always hire a private psychologist to eval her if necessary but I

need to get on that if it is necessary. Then we've got a friend lawyer who's

going to do the guardianship stuff for us.

I am so frigging overwhelmed right now. She went to the GI yesterday and she was

seen after a couple of hours by the nurse practioner who strongly recommended

she have this combo endo/colonoscopy in order to check for bleeding and

inflammation, Crohn's and Colitis.( He told Jim he was very serious about this

and would do so if it were his child)

For the past month I have spoken with the actual doctor's nurses....3 of them

who firmly stated that all of the above were ruled out by the Prometheus test

and the barium 5 hour test. The doctor isn't available for an appt for months. I

am so tired of getting tossed around by these people. I KNOW he's the only game

in town but sheesh....what the heck is the truth?? Sorry to vent.

But while I'm at it jamie went on a rampage this AM during speech and scratched

and bit me and I started crying and everyhting has just gone to sh** since then.

Plus my back is so screwed up I can't even get out of the chair without severe

pain....despite putting in the effort to lose 20 whole lbs this month. Too much

info???? I'm sorry.

Thank you so much for helping with the 18 yo stuff. What would we all do without

you guys who have gone before us?

Sherry

[Guest guest]

I have a question. IF she does indeed have CROHN's or colitis, what would

the treatment be? Could she be treated AS IF she has these problems without

the tests?

I don't care if the NP said that if it was his/her child the tests would be

done - that person doesn't have to live with what you would have to go thru

inorder for her to have the tests done. Just my opinion. Only one of us

can understand that the prep might not be worth the info obtained.

I did NOT agree to have either of those test done when Elie was 11 and still

not toilet trained. Got the same speech from the GI. I opted out. My

argument was that even if he had a physical problem, what would that change?

There wasn't going to be surgery, treat,ment was diet and meds, so why not

diet and meds wihtout the tests. The doc told me to thnk it over. I did -

that was 10 years ago. The bowel issue corrected as Elie's diet improved.

His training progressed when he ws old enough (developmentally) to reliably

understand his body.

We filed the papers for SSI one month before his birthday. I filled out the

papers on line, I believe and then we went to the office with an

appointment. VERY IMPORTANT to get an appointment so that you may only have

to wait an hour!!! With Elie - longer would have been disasterous.

You can call an 800 number and get info on SS. I would NEVER trust a s/c

for info on SS. They just do not know.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >

>Subject: Re: SHERRY

>Date: Tue, 28 Nov 2006 14:23:06 -0500

>

>Hi Sara,

>dh just stopped by tho SS office to pick up an application.( took an HOUR

>just to ask for one :-( Our medwaiver coordinator told us to do so......Do

>you know if it can be submitted before the 18th birthday or do we have to

>wait till Jan 7? I asked her about the IQ test and she told me that because

>s primary dx listed on medwaiver is " Autism " not DS she would not ever

>need an IQ test. I need to check this out further. I do have her ped who's

>had her since age 2 who could write something to the effect that she will

>always need help and I wrote to our So FL Autism group to see what they

>knew about IQ tests but no response so far. I can always hire a private

>psychologist to eval her if necessary but I need to get on that if it is

>necessary. Then we've got a friend lawyer who's going to do the

>guardianship stuff for us.

>

>I am so frigging overwhelmed right now. She went to the GI yesterday and

>she was seen after a couple of hours by the nurse practioner who strongly

>recommended she have this combo endo/colonoscopy in order to check for

>bleeding and inflammation, Crohn's and Colitis.( He told Jim he was very

>serious about this and would do so if it were his child)

> For the past month I have spoken with the actual doctor's nurses....3 of

>them who firmly stated that all of the above were ruled out by the

>Prometheus test and the barium 5 hour test. The doctor isn't available for

>an appt for months. I am so tired of getting tossed around by these people.

>I KNOW he's the only game in town but sheesh....what the heck is the

>truth?? Sorry to vent.

>

>But while I'm at it jamie went on a rampage this AM during speech and

>scratched and bit me and I started crying and everyhting has just gone to

>sh** since then. Plus my back is so screwed up I can't even get out of the

>chair without severe pain....despite putting in the effort to lose 20 whole

>lbs this month. Too much info???? I'm sorry.

>

>Thank you so much for helping with the 18 yo stuff. What would we all do

>without you guys who have gone before us?

>Sherry

>

>

[Guest guest]

<<Sherry....I feel the same way. No one gives a hoot about

Gareth and the pain he has been in since Sept. Pisses me off royally but there

is nothing I can do about it. G's Prometheus test came back negative, too,

so we are back to the esophagus causing all the problems. I am so sick of

all the expensive blood work, X-rays, etc......I just want them to scope him to

find the problem. As for you, I wouldn't go for the endoscopy till the Dr.

says it's needed. Like you, we only have the one Ped gastro doc. Prayers

coming for you and .........Gareth and I are in the same boat with

ya!!! Take care, Everyone.

Margaret>>

Thanks for commiserating Margaret; it helps!! I just sent 5 faxes of the same

letter to each of the nurses, NP and doctor explaining the discrepancy in their

instructions to us. Hopefully the Doctor himself will at least become aware that

everyone is giving us a different story. The Prometheus test actually came back

with a few markers but supposedly not enough to worry about. However the NP

apparently feels differently. Believe me if this were a simple scope I'd go for

it but with them wanting a colonoscopy and all that goes with preparing for that

along with the endoscopy I had better be absolutely certain she needs it. She's

gonna have to go 2 days without eating then drink a gallon of bitter crapola to

totally clean her out. If it's done in the hospital they'll stick a tube down

her nose to give it to her. I just can't imagine her going without food for 2

days or leaving a tube in her nose without having to be put into a coma first.

The hematologist told us he didn't think she was bleeding and didn't need this

test but the GI NP says different.

Have you thought of or has anyone mentioned using an adult GI doc yet due to

Gareth's age?

I'd rather see a peds doc but perhaps there are more GI docs available for

adults. I just don't know. It's really crazymaking isn't it?

Sherry

[Guest guest]

Sara,

<<I have a question. IF she does indeed have CROHN's or colitis, what would

the treatment be? Could she be treated AS IF she has these problems without

the tests?>>

dh asked this actually and they replied she may need antiinflammatory drugs or

even steroids for inflammation. I have to check and see what type of antiinflamm

stuff they're talking about. Do you know Margaret? She's been on the specific

carbohydrate diet for years which is designed specifically to treat Crohn's and

Colitis. Of course if she IS bleeding that would be something different. She

doesn't have reflux or GERD or weirtd stools so I'm not getting this.

Just that the inflammation may be causing the malabsorption.

<<I don't care if the NP said that if it was his/her child the tests would be

done - that person doesn't have to live with what you would have to go thru

inorder for her to have the tests done. Just my opinion. Only one of us

can understand that the prep might not be worth the info obtained.>>

Exactly!!! They don't have a clue

<<I did NOT agree to have either of those test done when Elie was 11 and still

not toilet trained. Got the same speech from the GI. I opted out. My

argument was that even if he had a physical problem, what would that change?

There wasn't going to be surgery, treat,ment was diet and meds, so why not

diet and meds wihtout the tests. The doc told me to thnk it over. I did -

that was 10 years ago. The bowel issue corrected as Elie's diet improved.

His training progressed when he ws old enough (developmentally) to reliably

understand his body.>>

I read this to dh last night and he went YAY way to go!!!! What diet and meds

did you use?

<<We filed the papers for SSI one month before his birthday. I filled out the

papers on line, I believe and then we went to the office with an

appointment. VERY IMPORTANT to get an appointment so that you may only have

to wait an hour!!! With Elie - longer would have been disasterous.

You can call an 800 number and get info on SS. I would NEVER trust a s/c

for info on SS. They just do not know.>>

Thank you so much for your help on this issue. I was told by some local moms

that all we need is a paper 1 page even from her doctor which won't be a

problem. We've got the application....looks like FUN!! I was told they have to

review the SSI every year? yes or no? At SS did tell dh that jamie did not have

to be present for the filing appointment (?). What's SSD?

Sherry

..

[Guest guest]

Hi, Everyone....Sherry....a Mom I know just told me that her daughter goes

on 10 mg of Prozac one week before her period for severe PMS. She is only on

it for a week, then off for 3. She says it's been a life saver.

Take care, Everyone.

Margaret

[Guest guest]

<<Hi, Everyone....Sherry....a Mom I know just told me that her daughter goes

on 10 mg of Prozac one week before her period for severe PMS. She is only on

it for a week, then off for 3. She says it's been a life saver.>>

Margaret

Now this is very interesting....and I have a bottle of prozac here rxed for

for OCD. Maybe I'll try it before her period next month. Thank YOU!! I

remember now they were doing low dose prozac marketed as sarafem after the

patent wore off for PMS.

Sherry

[Guest guest]

Hi - thanks for worrying about us but I just got up and this is the first I've

heard of the storms. They are way north of us. I've gotta chck on some friends

who live up there tho!@

Sherry

[Guest guest]

Hi,

I'm out here celebrating our 20th anniversary with my husband in

Las Vegas. It was a close flying out Thursday towards GA's, due to

the weather we made it out as we were able to reroute.

I'm taking a little break until we head out and about town again,

then watch a concert this evening.

Anyways checking out the weather to see how it looked out in Atlanta,

GA as we have to communte, we are returning tomorrow.

Then to notice the news of FL, just had to check in the list and see

if you were alright? This is nice to read your response,hope your

friends are alright too? The history of understanding this climate

change we will never know of this pattern ocurring nowadays.

Irma,18,DS/ASD

>

> Hi - thanks for worrying about us but I just got up and this is the

first I've heard of the storms. They are way north of us. I've gotta

chck on some friends who live up there tho!@

> Sherry

>

>