Blood 'n Guts ('s)

[Guest guest]

This is a crosspost that will be spread all over the internet today,

just like the Neiman Marcus cookie recipe so skip it if need be and

forgive me my redundancy.

Three months ago began having symptoms of pain again, exactly as

she had exhibited a year previous when she was tested by Great Smokies

Lab and treated for 4+ candida albicans and 4+ klebsiella with augmentin

and diflucan, to which she responded almost miraculously, remaining pain

free for a year.

This time, instead of spending two years hunting for a cause and being

shown the door by the gastro docs, we went ahead and tested again. Test

showed regrowth of candida albicans plus varied other species at 4+ (in

spite of strict diet and supplement regime) and klebsiella and bacillus

3+. She was treated with cipro and nizoral this time to cover the

broader spectrum of pathogens.

She seemed to improve slightly at first, then began the moaning and

yelling which grew increasingly worse as the day progressed. I might

mention it was also at this time that we tried to follow well meant

advice and push more solid foods in hopes of pushing past this 11 year

" baby food " period we've been stuck in.

A week ago, 2 weeks post medications, she began vomiting and passed a

large black tarry stool. We were sent to the ER Wednesday~ RBC normally

12.5 was at 8. After 9 hours in the ER she was sent by ambulance to

another hospital wth a ped.

ICU. They waited, hoping the bleeding would stop and that the suspected

" ulcer " might heal itself as sometimes happens~ while she was on IV

fluids and zantac @8 hrs. Unfortunately over the next 2 days her blood

count dropped to 5.9 and she required 2 units of transfused blood before

the endoscopy could be performed.

Subplot: she was given an echocardiogram (having had 2 previous open

heart surgeries and a residual stable mitral leak) while awake, but very

quiet. The perkiest cardiologist I have ever met came bounding in to

report...almost gleefully it seemed....that 's pressures were way,

way up, the pulmonary artery was severely constricted and we were

looking at imminent surgery. Hubby nearly needed a transfusion at that

point and I simply did what I do best and went into denial mode.

Anyway back to our heroine~ miss is rolled down to OR, given

another sedated echo and endoscopied. (They used versed and diprivan

again as in a previous scope~ great stuff- great recovery). Preliminary

results showed esophagus was fine, duodenum with perfect villi, thank

you very much. No ulcer but a severe diffuse bleeding area in the

stomach. Labs confirmed severe chronic gastritis such as is normally

seen in much older patients. No H pylori bacteria (which is the cause

80% of the time)

Back to the subplot~ skip this part if religion offends you.. The little

one is rolled back upstairs to ICU unconscious. Our severely Christian

friends show up~ we hold hands around the bed and they lead a prayer

that would make MLKing proud. By that afternoon our own cardiologist

calls to say the sedated echo done by the same technician showed

absolutely no regression in her cardiac status. He read both echos and

was totally stumped as the difference in the two was much too great to

be explained by awake vs. sedated status. That was my Mother's day

present!!!!

Now to my point~ and there IS a point~ the entire time was on IV

fluids and off all food and drink, she was extremely calm, very very

affectionate, NOT stimming, not complaining, verbalizing non stop,

giggling and laughing. Staff referred to her as " sweet " , " adorable " ,

" well behaved " (???!!!) As soon as she was allowed juice and then mild

food she burst out crying and all her " autistic " behaviors kicked in

once more.

She was RXed Prevacid (a proton pump inhibitor that turns off the

secretion of acid and don't even think about getting one of these

compounded as they are still on patent...we chose sugar over

corn-prilosec). For now, the bleeding has stopped, we are home where I

am blending away, making nonallergenic, non acidic, gf cf yf mushy

concoctions and feeding her @ 2 hrs. She is still in alot of discomfort

on and off between meals. If we do not see the results we want by Monday

they will up her dose of prevacid.

So~ where did it come from?...don't know. Will she always have to be on

stomach meds?...don't know. Did too much acid cause the candida or vice

versa? Did we overtreat the candida and cause the bleeding? (still OK as

at least now the gastroguys believe there is a problem). Do I wish we

could hook her up to an IV and have our sweet little girl back

permanently? you betcha! Do I know beyond a doubt that at least with my

child there is a gut-autism connection? You'd better believe it!

And do I KNOW prayer works?? oh yeah!.

Thanks all for your support, Sherry

mom to 11 DS/Autism in Florida

[Guest guest]

In a message dated 5/17/00 1:55:42 PM Eastern Daylight Time, gldcst@...

writes:

<< So~ where did it come from?...don't know. Will she always have to be on

stomach meds?...don't know. Did too much acid cause the candida or vice

versa? Did we overtreat the candida and cause the bleeding? (still OK as

at least now the gastroguys believe there is a problem). Do I wish we

could hook her up to an IV and have our sweet little girl back

permanently? you betcha! Do I know beyond a doubt that at least with my

child there is a gut-autism connection? You'd better believe it!

And do I KNOW prayer works?? oh yeah!.

Thanks all for your support, Sherry >>

WOW Sherry!!!! WHAT a story!!!!! You guys sure have been through the

ringer!!!! I am so happy that you are back home and out of this crisis

anyway!!!! Please keep us posted on what the gastro-guys decide to do. ANd

the prayers will keep coming.

Donna

[Guest guest]

Sherry......

WHEW!!!

So glad you made it home, but I can't believe you're all still alive!

Now...I want to see if I have it straight: had severe gastritis,

cause unknown, right?

She's on a medication that's supposed to do what to alleviate and help the

gastritis situation?

When you say " overdo the yeast " do you mean by taking it away or by adding

some in when you tried different food?

Am I confused? well, sorta.

And...I've seen lots of things in the ICU that center around the power of

love, family, and/or prayer. Alot of really amazing things. Good for you

for having enough friends and support to make a circle big enough to go

aorund the bed. I " m not at all sure we'd have that many who'd be there.

What can we do for *you* now??

hugs,

j

[Guest guest]

SHERRY, truly a wonderful story to share and hear......nice to know there are

people out there rooting for jamie.......... you should write an article

about this experience adn publish it.......sent the hairs raising on my

arms......take care and hang in there

[Guest guest]

Joan wrote << had severe gastritis, cause unknown, right? >>

Yup: they thought it was a bleeding ulcer~ didnt find a specific ulcer

but a large area of diffuse bleeding on the stomach wall. The danger

here is that (A) they can lose too much blood like did or that (

the eaten away part of the stomach can perforate and everything spills

out causing peritonitis (is that right kara?) This GI stuff is new to me

too.

<< She's on a medication that's supposed to do what to alleviate and

help the gastritis situation? >>

Prevacid (or Prilosec) are meds that shut off the secretion of acid in

the stomach and give it a chance to heal up.

<< When you say " overdo the yeast " do you mean by taking it away or by

adding some in when you tried different food?>>

No I meant we may have overdone the " treatment " for the yeast ie

Nizoral. But I really think she just cannot handle solid foods.The

speech paths always want solids of course, as well as the nutritionist

for obvious reasons, but I just think 's system can't break them

down for some reason. She was making great progress for a couple of

weeks with raw celery sticks, vegetables, hot dogs etc. but now I think

they were probably scraping into this raw are and causing bleeding. I

don't know. But she's on pureed bland food now. PS any unofficial

dietary advice gladly welcome:))

Sherry...oh PS surprise!!! Jim left this AM and got up at 3:45.

See a pattern here??? Yawn