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Liz,

I am so glad some positive things are happening. You sound so much

better today! Here's to some real help coming your way from Home

Health and the autism grant. I'm continuing to pray for Miss Tori

and her lovely Momma.

Hugs,

Donnell

>

> Thanks again for all your support! This is why I love this group!

>

> Anyway, thought I would update you as of today. We had Tori's bw

drawn yesterday to check her thyroid levels. Should know tomorrow.

We met with our new Intensive Case Manager this morning and she will

be spearheading the Home Health help and the new PA. Autism Grant

for me. This will give me some break.

>

> Here's wishing everyone

>

> A VERY HAPPY & HEALTHY EASTER SEASON!

>

> Liz

>

>

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I know it doesn't help but I agree it's worth a try and then you can slowly

add one back at a time to see what happens. This is just my opinion but

sometimes when they are taking too much you can't tell what is or isn't causing

the problem but if you go off and then slowly add one back very slowly you

might see if any one of them or the combination of them might be the culprit.

Carol

In a message dated 3/21/2008 2:23:11 P.M. Eastern Daylight Time,

liz.desantis@... writes:

I've stopped her Risperdal, Prozac and Depakote. I know I am playing with

fire, but I am running out of options.

Re: Update

hmmmm. I'm hoping things continue to go well. What meds are you messing with?

I hope you figure it out soon Liz, I know it's been a rough time over there

lately.

Thinking of you!

Jayne

Liz DeSantis <_liz.desantis@..._ (mailto:liz.desantis@...) > wrote:

Hi, everyone.. Hope everyone is getting ready for a wonderful Easter Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is

1.36 and her TSH is 2.06. So I am figuring the behaviors we have been having

have nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small

challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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hmmmm. I'm hoping things continue to go well. What meds are you messing with?

I hope you figure it out soon Liz, I know it's been a rough time over there

lately.

Thinking of you!

Jayne

Liz DeSantis wrote:

Hi, everyone.. Hope everyone is getting ready for a wonderful Easter

Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is 1.36

and her TSH is 2.06. So I am figuring the behaviors we have been having have

nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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I've stopped her Risperdal, Prozac and Depakote. I know I am playing with fire,

but I am running out of options.

Re: Update

hmmmm. I'm hoping things continue to go well. What meds are you messing with?

I hope you figure it out soon Liz, I know it's been a rough time over there

lately.

Thinking of you!

Jayne

Liz DeSantis wrote:

Hi, everyone.. Hope everyone is getting ready for a wonderful Easter Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is

1.36 and her TSH is 2.06. So I am figuring the behaviors we have been having

have nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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As long as it's not her synthroid! Hey you gotta do what you gotta do. I know

the feeling of coming to your last straw. Hey, have tried going gluten free

with her yet? We are just about a month into this and I'm noticing remarkable

changes in . I know when I get the cow's milk products out of him, it

will improve even more but I just can't get there yet. Gluten out is making a

huge difference.

Just a thought.

Hang in there,

Jayne

Liz DeSantis wrote:

I've stopped her Risperdal, Prozac and Depakote. I know I am playing

with fire, but I am running out of options.

Re: Update

hmmmm. I'm hoping things continue to go well. What meds are you messing with?

I hope you figure it out soon Liz, I know it's been a rough time over there

lately.

Thinking of you!

Jayne

Liz DeSantis wrote:

Hi, everyone.. Hope everyone is getting ready for a wonderful Easter Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is 1.36

and her TSH is 2.06. So I am figuring the behaviors we have been having have

nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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Hi Liz,

I am far from an expert but it is my understanding that risperdal must be

decreased gradually. I believe it could be dangerous to abruptly discontinue

specific meds. I am not comparing but your issues with Tori remind me when Zeb

was that age. I couldn't understand why he was having major behavioral issues. I

questioned the school staff etc. Zeb was not being treated very well, had I

known back then. It brings back painful memories. I am not implying that this is

the cause with Tori's issues. I also took Zeb to the dr and prayed that it was a

thyroid issue, an easy fix. I would make a point to rule out anything happening

at school. I wish you and your family a Happy Easter.

Charlyne

Mom to Zeb 15 DS/OCD/ASD?

Liz DeSantis wrote: Hi,

everyone.. Hope everyone is getting ready for a wonderful Easter Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is

1.36 and her TSH is 2.06. So I am figuring the behaviors we have been having

have nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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I know how stupid it is of me to try this, but I am running out of options.

Today was another GREAT day...with a few minor issues, but nothing like the

usual. Actually, the only changes thus far we have seen is that she is REALLY

sensitive now to noises, and she is saying words we have no idea what she is

meaning. Who the heck is Teleche` and why was she shot in her dress and

bleeding?

Liz

Re: Update

Hi Liz,

I am far from an expert but it is my understanding that risperdal must be

decreased gradually. I believe it could be dangerous to abruptly discontinue

specific meds. I am not comparing but your issues with Tori remind me when Zeb

was that age. I couldn't understand why he was having major behavioral issues. I

questioned the school staff etc. Zeb was not being treated very well, had I

known back then. It brings back painful memories. I am not implying that this is

the cause with Tori's issues. I also took Zeb to the dr and prayed that it was a

thyroid issue, an easy fix. I would make a point to rule out anything happening

at school. I wish you and your family a Happy Easter.

Charlyne

Mom to Zeb 15 DS/OCD/ASD?

Liz DeSantis wrote: Hi, everyone.. Hope everyone is

getting ready for a wonderful Easter Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is

1.36 and her TSH is 2.06. So I am figuring the behaviors we have been having

have nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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Liz, my five yr old granddaughter will say weird things to me at times to get my

attention. Tori could be doing the same. Just a thought.

Charlyne

Mom to Zeb 15 DS/OCD/ASD?

Liz DeSantis wrote: I know

how stupid it is of me to try this, but I am running out of options. Today was

another GREAT day...with a few minor issues, but nothing like the usual.

Actually, the only changes thus far we have seen is that she is REALLY sensitive

now to noises, and she is saying words we have no idea what she is meaning. Who

the heck is Teleche` and why was she shot in her dress and bleeding?

Liz

Re: Update

Hi Liz,

I am far from an expert but it is my understanding that risperdal must be

decreased gradually. I believe it could be dangerous to abruptly discontinue

specific meds. I am not comparing but your issues with Tori remind me when Zeb

was that age. I couldn't understand why he was having major behavioral issues. I

questioned the school staff etc. Zeb was not being treated very well, had I

known back then. It brings back painful memories. I am not implying that this is

the cause with Tori's issues. I also took Zeb to the dr and prayed that it was a

thyroid issue, an easy fix. I would make a point to rule out anything happening

at school. I wish you and your family a Happy Easter.

Charlyne

Mom to Zeb 15 DS/OCD/ASD?

Liz DeSantis wrote: Hi, everyone.. Hope everyone is

getting ready for a wonderful Easter Holiday.

Just wanted to update you all. Tori's thyroids came back great. Her FT4 is 1.36

and her TSH is 2.06. So I am figuring the behaviors we have been having have

nothing to do with them. =(

Anyway, Mom is messing with meds, and have not given her any in 2 days.

Yesterday and today, so far, have been really good (with just small challenges).

I could really be able to handle this kid if things would just stay this way.

Liz

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  • 1 year later...

YEA Tori!!!!!!     Progress Liz, progress.    Even if you get jinxed, enjoy

it while you can.   ;-)

Hugs,

Donna

Update

Tori has eaten her fruit snacks (with minor discomfort) and is on her 2nd

bowl of dry cheerios. Should I say anything and jinx myself...oh, yes and is

slowly drinking her blue ICEE from WaWa.

Liz

--

Let me win, but if I cannot win, let me be brave in the attempt. - Special

Olympics Motto-RIP Eunice Kennedy Shriver

“When we long for life without difficulties, remind us that oaks grow strong

in contrary winds and diamonds are made under pressure.-Author Unknown

" Knowing trees, I understand the meaning of patience. Knowing grass, I can

understand persistence. " - Hal Borland

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Liz,

I am so glad to hear that Tori is doing well.  Way to go Tori!  I am sorry I

did not get to follow up sooner.  I was off of the site for a couple of

days.  My nephew is in the hospital he got his foot caught in a lawn mower over

last weekend, and it has been a rough week. 

All of our best to Tori and your family, you must be very glad that it is over.

F.

________________________________

To:

Sent: Friday, September 4, 2009 3:59:14 PM

Subject: Re: Update

 

Liz, that's great, Tori seems to being doing well.

Charlyne

From: Liz DeSantis <lizdesantis98@ gmail.com>

Subject: Update

To: " DS-AUTISM " <@yahoogrou ps.com>

Date: Friday, September 4, 2009, 12:58 PM

Tori has eaten her fruit snacks (with minor discomfort) and is on her 2nd

bowl of dry cheerios. Should I say anything and jinx myself...oh, yes and is

slowly drinking her blue ICEE from WaWa.

Liz

--

Let me win, but if I cannot win, let me be brave in the attempt. - Special

Olympics Motto-RIP Eunice Kennedy Shriver

“When we long for life without difficulties, remind us that oaks grow strong

in contrary winds and diamonds are made under pressure.-Author Unknown

" Knowing trees, I understand the meaning of patience. Knowing grass, I can

understand persistence. "   - Hal Borland

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! OMG! Is he ok???? Thanks for caring! How are you guys doing?BTW-I

see you guys haven't signed up for the Buddy Walk for DS... As I mentioned

before, if you guys just want to jump on Tori's Team " Nature's Greatest

Phenomenon " you are more than welcome.

Buddy Walk

2009<http://buddywalk.kintera.org/faf/home/default.asp?ievent=314536 & lis=1 & kntae\

314536=54086D56FF7244D891B0FEC87C9CB3E9>

Liz

>

>

> Liz,

> I am so glad to hear that Tori is doing well. Way to go Tori! I am sorry

> I did not get to follow up sooner. I was off of the site for a couple of

> days. My nephew is in the hospital he got his foot caught in a lawn mower

> over last weekend, and it has been a rough week.

> All of our best to Tori and your family, you must be very glad that it is

> over.

> F.

>

> ________________________________

> From: " charlyne1121@... <charlyne1121%40sbcglobal.net> " <

> charlyne1121@... <charlyne1121%40sbcglobal.net>>

> To:

> Sent: Friday, September 4, 2009 3:59:14 PM

> Subject: Re: Update

>

>

> Liz, that's great, Tori seems to being doing well.

> Charlyne

>

>

>

> From: Liz DeSantis <lizdesantis98@ gmail.com>

> Subject: Update

> To: " DS-AUTISM " <@yahoogrou ps.com>

> Date: Friday, September 4, 2009, 12:58 PM

>

> Tori has eaten her fruit snacks (with minor discomfort) and is on her 2nd

> bowl of dry cheerios. Should I say anything and jinx myself...oh, yes and

> is

> slowly drinking her blue ICEE from WaWa.

> Liz

> --

> Let me win, but if I cannot win, let me be brave in the attempt. - Special

> Olympics Motto-RIP Eunice Kennedy Shriver

>

> “When we long for life without difficulties, remind us that oaks grow

> strong

> in contrary winds and diamonds are made under pressure.-Author Unknown

>

> " Knowing trees, I understand the meaning of patience. Knowing grass, I can

> understand persistence. " - Hal Borland

>

>

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Oh Liz, another week and suff will all fall into place< im hoping and praying

for both you and Tori, You need a LIZ break we love ya!!!!

> To:

> From: lizdesantis98@...

> Date: Wed, 9 Sep 2009 23:52:54 -0400

> Subject: Update

>

> Ok, I know i haven't been on here in a while. It has been one hairy week.

> Tori is not recouping the way I thought she would...had to get a nurse in to

> care for her so I could go to work...what a nightmare that was on a holiday

> weekend. Then I started work yesterday, got to spend a whole 3 periods in

> the classroom of my dreams, and WHAM!!!

>

> The SPED Supervisor came in and asked to see me. Then off to the VP's

> office. Well, apparently, they NEED someone they need someone responsible

> enough to keep an eye on 4 kids from Learning Support. So I now attend LTCI

> (VOTECH) with a few students from 10:30-2:30..so I am out of my dreamy

> classroom, doing support in 2 classes from 9-10:30..and then off we go..Had

> to change child care plans...and all last minute!!

>

> And I am trying feverishly to put the final touches on our Buddy Walk which

> is next Sat. Over 600 people registered to date! My goal is 1000! I am just

> exhausted...and can barely see straight. And I don't know if Tori will be

> well enough to go surfing next week at Montauk. I have to check with her

> surgeon on Wed.

>

> Liz

> --

> Let me win, but if I cannot win, let me be brave in the attempt. - Special

> Olympics Motto-RIP Eunice Kennedy Shriver

>

> “When we long for life without difficulties, remind us that oaks grow strong

> in contrary winds and diamonds are made under pressure.-Author Unknown

>

> " Knowing trees, I understand the meaning of patience. Knowing grass, I can

> understand persistence. " - Hal Borland

>

>

>

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If lif didn'thand you scrambled eggs instead of whole shells, what would you

ddo?????? So sorry your life got scrambled - again!

On Wed, Sep 9, 2009 at 11:52 PM, Liz DeSantis wrote:

> Ok, I know i haven't been on here in a while. It has been one hairy week.

> Tori is not recouping the way I thought she would...had to get a nurse in

> to

> care for her so I could go to work...what a nightmare that was on a holiday

> weekend. Then I started work yesterday, got to spend a whole 3 periods in

> the classroom of my dreams, and WHAM!!!

>

> The SPED Supervisor came in and asked to see me. Then off to the VP's

> office. Well, apparently, they NEED someone they need someone responsible

> enough to keep an eye on 4 kids from Learning Support. So I now attend LTCI

> (VOTECH) with a few students from 10:30-2:30..so I am out of my dreamy

> classroom, doing support in 2 classes from 9-10:30..and then off we go..Had

> to change child care plans...and all last minute!!

>

> And I am trying feverishly to put the final touches on our Buddy Walk which

> is next Sat. Over 600 people registered to date! My goal is 1000! I am just

> exhausted...and can barely see straight. And I don't know if Tori will be

> well enough to go surfing next week at Montauk. I have to check with her

> surgeon on Wed.

>

> Liz

> --

> Let me win, but if I cannot win, let me be brave in the attempt. - Special

> Olympics Motto-RIP Eunice Kennedy Shriver

>

> “When we long for life without difficulties, remind us that oaks grow

> strong

> in contrary winds and diamonds are made under pressure.-Author Unknown

>

> " Knowing trees, I understand the meaning of patience. Knowing grass, I can

> understand persistence. " - Hal Borland

>

>

>

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