update

[Guest guest]

In a message dated 8/7/2007 5:01:32 P.M. Eastern Daylight Time,

gldcst@... writes:

Her SIBs and aggression have been absolutely frightening. Thought we'd have

to take her to the ER Sunday night. So- here's hoping. Just a bit of a fill

in.

I sure hope this is a big turn around for her and things get better real

soon.

Carol

Trishasmom

She isn't typical, She's Trisha!

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Sherry,

I checked out the website and some of the clips, and found them VERY

interesting.

So sorry to hear is regressing. Something I was reminded of recently:

all behavior communicates something. If is struggling with internal

problems it is going to show outwardly. So sorry this is happening, but my

prayers are with you for some good input as 's GI seeks out some outside

input.

Hugs,

Donnell

gldcst wrote:

Her Highness has been regressing miserably and has become extremely

aggressive and violent. She has to be approached like a porcupine- just waiting

for you to get close enough to zap out one of those quills. (Is that how they do

it?LOL)

I don't know if anyone checked out the video clips on autism and GI problems

that I sent but I had dh sit down and watch them last night before the GI

appointment today. Thank God; he's like - show him a video and he's got it.

Anyway he FINALLY got riled up enough to go in with her today and demand

treatment for her Crohn's disease. Luckily the doc was all ready with a plan

after reading her latest labs. More blood in the stool, very very low protein,

low low B12 etc.

She got her B12 shot and he started her on Entocort EC ( a nonsystemic steroid)

so her intestines can get some time to cool down. We're praying it helps and

that she doesn't have another horrible reaction to it like she did the first

med. Also he wants to start her back on Prevacid again. And he even promised to

call Drs. Buie and Krigsman to get suggestions for her treatment. (We are sorely

lacking in gastro docs in Florida...especially ones who take medicaid).

Her SIBs and aggression have been absolutely frightening. Thought we'd have to

take her to the ER Sunday night. So- here's hoping. Just a bit of a fill in.

Thanks for listening.

Sherry

[Guest guest]

In a message dated 8/7/2007 5:01:08 P.M. Eastern Daylight Time,

gldcst@... writes:

Her SIBs and aggression have been absolutely frightening. Thought we'd have

to take her to the ER Sunday night. So- here's hoping. Just a bit of a fill

in. Thanks for listening.

Sherry

Sherry, I'm SO sorry honey. It sucks that you have to yell and scream to

get appropriate treatment. Duff had to do that for me with my blown up

disc in my neck. Thank God he did it when he did....neuro guy said I was WAY

close to being paralyzed, which is why they did an emergency fusion.

I hope the meds work for your baby too, Sherry. Prevacid didn't do

anything for Maddie. She's been on them all man, since she was two. The

last couple years she's been on the reglan 4x a day, and nexium twice a day.

And the nexium I had to fight the insurance company to get it paid

for...took me a whole year!!!!!! I've got FIVE kids and have paid Aetna for

insurance for years, and THIS is what I have to put up with!!!!!! I'm in

another

fight with them to get her teeth done...they say she doesn't need to be put

out for it. HA!!!!!! When had her eating disorder and went to

Renfrew, we had Keystone at the time. They didn't do the eating disorder

thing, so we had to pay $15,000 out of pocket on two days notice. We were

in such a state that we just did it, but a couple weeks later, I fought,

cried, fought and cried some more. Called any high ups I could for

support...found some and played my cards. Ended up getting a refund check

AND now

patients at Renfrew can use their Keystone insurance. You do what you have

to do, but it's infuriating, especially since we are ALL usually operating in

a time of crisis. It's amazing we can even think straight.

I am thinking of you dear, and praying that things get better FAST!!!!!

Hugs,

Donna

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

<<Something I was reminded of recently: all behavior communicates something.>>

Thanks to Donnell, Carol, and Margaret (I will check on that autoimmune drug

Margaret)

Boy. Donnell....you hit right on the problem. I KNOW she's communicating that

she's in terrible pain and I can't help her.

Thanks again you guys,

Sherry

[Guest guest]

Whoa Sherry,

I really pray that the GI doc will get a hold of Dr. Krigsman and

Dr. K will cooperate with whatever he can. Prayers that something is

solved here, this is too much discomfort going on for .

I lucked out here in SA with a GI doc here for that accepts

Medicaid and our private health insurance and works with the adults.

These are those issues to deal with all the time.

So has Crohn's disease?

Irma,19,DS/ASD

>

> Her Highness has been regressing miserably and has become extremely

aggressive and violent. She has to be approached like a porcupine-

just waiting for you to get close enough to zap out one of those

quills. (Is that how they do it?LOL)

>

> I don't know if anyone checked out the video clips on autism and GI

problems that I sent but I had dh sit down and watch them last night

before the GI appointment today. Thank God; he's like - show him

a video and he's got it. Anyway he FINALLY got riled up enough to go

in with her today and demand treatment for her Crohn's disease.

Luckily the doc was all ready with a plan after reading her latest

labs. More blood in the stool, very very low protein, low low B12 etc.

>

> She got her B12 shot and he started her on Entocort EC ( a

nonsystemic steroid) so her intestines can get some time to cool down.

We're praying it helps and that she doesn't have another horrible

reaction to it like she did the first med. Also he wants to start her

back on Prevacid again. And he even promised to call Drs. Buie and

Krigsman to get suggestions for her treatment. (We are sorely lacking

in gastro docs in Florida...especially ones who take medicaid).

>

> Her SIBs and aggression have been absolutely frightening. Thought

we'd have to take her to the ER Sunday night. So- here's hoping. Just

a bit of a fill in. Thanks for listening.

> Sherry

>

>

[Guest guest]

<<So has Crohn's disease?>>

Yes...IBD which includes in her case colitis, crohn's, inflammation of the

entire GI tract, exactly what Wakefield et al describe as autistic

enterocolitis. I'm sooooo sick of " well we really don't know what causes it "

except that it's autoimmune in her case. This is what causes the malabsorbtion

which is going to land her in the hospital real soon if some progress is not

made.

Sherry

[Guest guest]

Hmm Sherry,

This is totally a different case here, guess I missed this part.

I would say I probably then would of " rob the bank " , of course not

literally and would of found a way to travel out to Austin if

was dx with this disease. Not that you have not, this just would of

rushed me out there if this had been the case.

's GI doc did tell me that if I had not taken action on what

I am doing now, he would of had an onset of something like this as he

got older. This is one of those docs who is a pretty serious person,

you know one of those like I have run across in the past years " Do not

tell me how to do my job " thing or " Do not believe everything you

read. " He actually was listening to me based on what I had on hand.

At times he was talking to me like I was another medical professional

and I had to redirect him into the Parent mode, this is how amazed or

should I say open-minded he became and of course how I earned that

respect.

Sorry got carried away here, like a brag moment, its just been a

journey when I had dealt with numerous medical professionals and never

received this type of understanding and doc was willing to help anyway

he could before seeking heading out to Thoughtful House where Medicaid

& 's health insurance covered on what was needed.

What other resource information have you contacted?

Like have you looked into the The Crohn's and Colitis Foundation of

America? Only to see what type of fund resource if possible?

If you had the funds to go out to Austin, would Medicaid help at least

for the traveling expenses when all fails for any treatment for

out in FL and you need to seek elsewhere?

I know you've mentioned has Medicaid but is she under any

private health insurance? Sorry for the personal questions, just my

minds spinning here with questions and thoughts.

Have you contacted anyone from Thoughtful House?

Not to add on to your worry but I know how much you have been

searching for answers here or with the alternative trials. The only

thing I am aware is that " no special diet has been proven effective

for preventing or treating Crohn’s disease, but it is very important

that people who have Crohn’s disease follow a nutritious diet and

avoid any foods that seem to worsen symptoms. There are no consistent

dietary rules to follow that will improve a person’s symptoms " .

Then of course I have witnessed and heard from parents who have kids

with autism and then this another case for our individuals with Down

syndrome due to the characteristics of the Trisomy 21. I can imagine

how Crohn's disease and ulcerative colitis interfere with digestion

though.

" Decreasing poorly digestible carbohydrates may decrease symptoms of

gas, bloat, cramps, and diarrhea in patients with IBD, but that is not

the same thing as decreasing the inflammation, or affecting the

disease process. Unlike the gluten-free diet for celiac sprue, which

has a well-researched basis, and well-demonstrated track record for

affecting the underlying mechanisms at work in the disease process,

the SCD does not. Bottom line: it may be worth a try, " which seems you

have and still no answer here.

Does stress impair or affect when near her PMS & monthly

menstrual cycles?

While you and 's doc are taking this challenges in inquiring on

the next steps. I'll be in the look out just for anything in the mean

time. Sorry, I know I am no help here but just wanted to send you some

comfort & prayers and give you that Faith to hang on to.

I am supporting you on this all the way on not giving up, you come

this far and hopefully all of us here could help out some how. At

least a shoulder to lean on.

Take care & lots of hugs your way and to may she seek the

comfort needed for some relief.

Irma,19,DS/ASD

>

> <<So has Crohn's disease?>>

>

> Yes...IBD which includes in her case colitis, crohn's, inflammation

of the entire GI tract, exactly what Wakefield et al describe as

autistic enterocolitis. I'm sooooo sick of " well we really don't know

what causes it " except that it's autoimmune in her case. This is what

causes the malabsorbtion which is going to land her in the hospital

real soon if some progress is not made.

> Sherry

>

>

>

>

[Guest guest]

I rarely have time to post as we have taken in an additional 2 teenage boys

(LONG story). It has taken us on quite the roller coaster ride! So, we now have

5 boys. There are (2) 16 yr olds, our 15 yr old son and the twins are now 12.

One of the twins, , has DS. He is entering middle school and I have a lot

of anxiety over this. This is the age when kids can really start getting mean

and when homework becomes really hard ON TOP of lovely hormones. I hope that

being in a really small school district will mean more acceptance...guess we

will have to see!

Mom to 5 boys - yikes!

[Guest guest]

is heading into middle school as well -- 6th grade starts on September 7th. CaseyTo: Multiples-DS Sent: Monday, August 1, 2011 8:48:28 PMSubject: Re: update

I am getting nervous about middle school too. Davey is going into 6th grade, so we have one more year. Love life and be gentle, I rarely have time to post as we have taken in an additional 2 teenage boys (LONG story). It has taken us on quite the roller coaster ride! So, we now have 5 boys. There are (2) 16 yr olds, our 15 yr old son and the twins are now 12. One of the twins, , has DS. He is entering middle school and I have a lot of anxiety over this. This is the age when kids can really start getting mean and when homework becomes really hard ON TOP of lovely hormones. I hope that being in a really small school district will mean more acceptance...guess we will have to see! Mom to 5 boys - yikes!

[Guest guest]

God Bless you all & Good Luck with middle school!  I'm have anxiety with just my two 5 yr olds going into Kindy....can't even imagine those years to come....I'm savoring all the sweet innocence they have now as I'm told it starts to slowly disappear in Kindy.

Enjoy the rest of summer!Sherry,Mom to Ray & Sam(Ds)

 

I rarely have time to post as we have taken in an additional 2 teenage boys (LONG story). It has taken us on quite the roller coaster ride! So, we now have 5 boys. There are (2) 16 yr olds, our 15 yr old son and the twins are now 12. One of the twins, , has DS. He is entering middle school and I have a lot of anxiety over this. This is the age when kids can really start getting mean and when homework becomes really hard ON TOP of lovely hormones. I hope that being in a really small school district will mean more acceptance...guess we will have to see!

Mom to 5 boys - yikes!