Re: Two year old needing comfirmed or not????

November 3, 2006

>

> To any one with 2 cents to share,

>

> We where kind of anxious to get our two year old (who has confirmed autism and

we

assume CD and colitis) checked out to be confirmed by colonoscopy and diagnosed

with

her form of intestinal disease.

>

A colonoscopy is a trying procedure and can be painful. I sure wouldn't put any

two year

old of mine through it voluntarily

Carol F.

SCD 6 years, celiac

November 3, 2006

Hi!

I don't have much advise, I just joined this group myself, but I can

relate a little. My two year old son is going for a colonoscopy on

Tuesday (and laxation on Monday) and I am SO scared!! He has been

having bloody and mucosy diarrhea for almost a year now, first they

thought it was allergies (he is allergic to many things), but the

blood test like CRP are elevated, his calprotectin is at 900 and

the amount of blood is scary now, it's just getting worse day by

day. Some times he just passes a big " ball " of bloody mucos, I canät

understand how he produces this amount of mucus!! He was

hospitalized a few days ago due to severe diarrhea (12-16 times a

day), hooked on IV. The whole thing makes me just desperate to try

something.

I also wonder if his intestine is really damaged and how safe are

those colonoscopies for those fragile, little kids.. and also the

narcosis can't be healthy. I wish I could save him from all those

procedures.

The only thing I haven't noticed is him suffering, He is happy and

since his hemoglobin became normal (from 7 to 12.8 after iron drops

for a few months) he seams to have more energy too. I just wonder if

I don't notice it.. how severe are those pains?? Maybe not all

patients experience them?

For you it must be even harder because you have to worry about the

drug sensitivity. When does she have those procedures done?

Alina, Sweden

>

> To any one with 2 cents to share,

>

> We where kind of anxious to get our two year old (who has

confirmed autism and we assume CD and colitis) checked out to be

confirmed by colonoscopy and diagnosed with her form of intestinal

disease.

>

> With her last lab tests, her makers came back positive for a form

of IBD such as Crohns or ulcerative Colitis. Her seizures have

vanished but they still want to do an EEG and MRI too. Great

improvements with SCD but she still is struggling in many ways.

>

> I have been so worried about having her looked at by scope or this

MRI. She is also very sensitive to medications. They would have to

nock her out with something for both procedures. Plus she is so

small. Only a mere 21 pounds, after this last flare she had...lost

some. She also has had strange reactions to meds, that are not

typical or explainable. Just like her mother.

>

> We now know that she came to SCD sicker than we first suspected.

>

> WE already assumed CD, since me and my husband are confirmed by

bipsosy....CD, and IBD run on both sides of the family too! But

worried that her care might change if she was confirmed. At this

time without confirmation (colonoscopy) they will do nothing for

her pain...she often ends up in the hospital with diarrhea and they

call it a VIRUS. Which I know it is not.

>

> Would it help to have validation? Dose anybody know????? What

else could they give her for IBD (Crohns or ulcerative Colitis)?????

>

> So far SCD is the only intervention that has worked. WE will have

to go back to intro again, to get her back on track. Even if she

begs for it...NO MORE RAW FRUITS OR VEGETABLES. The poor thing.

>

> I already suspected that she had ulcerations due to the little

blood and mucous we use to see (prior to SCD). In our first days

of SCD and Pecan BREAD, the protease in the enzymes that we wanted

to try (that are frequently recommended for ASD kids) sent her

almost into the hospital proving this.

>

> At the time I didn't know that people with ulcerations are warned

not to use enzymes with protease. Eight months out this bleeding and

mucous is now gone. Along with many of her autistic symptoms. So

we are trying the enzymes again. I think we will have to stop them

during this crises. What do you think about this?

>

> Any input welcome. I also have been told horror stories from

other mothers whose little ones have been looked at by scope. For

some this is very painful after wards and can be dangerous to the

organs...even if they do nock the child out. We are now truly

scared now to pursue this. What if she reacted to the

anesthesia??? Or they hurt her intestines??? I can't imagine how

fragile she is inside...heck her out side is so little.

>

> I too have suffered from iatrogenic troubles (caused by the

medical community) and all their drugs and remedies. I have died

almost six times now. I can not imagine this happening to my little

girl. Most doctors do not understand chemical sensitivity and how

deadly it can be. This fear is paralyzing me. Help guys. Talk

about having faith in Elaine. God, I wish I could speak to her

now. Can you guys speak for her????? OR give your best effort. I

need hope now.

>

> Lucy at Lucy's Kitchen said that Elaine use to say " Two step

forward...one step back " ....my God this is going to be a long four

years healing her, if this is the case.

>

> Thanks, Antoinette and (cd) parents to Kiki-2 (autism and

intestinal disease/not confirmed by orthodox medicine) (SCD 2/06)

>

November 3, 2006

In my humble opinion, the doctors are the ones who need to do the tests, to

cover their own a$$es (sorry).

I can't say whether or not you should do the scoping. I mean, is she improving

on the current regimen (SCD)? Or do you feel she needs treatment with some

other drug or whatever? It just seems like no matter what of those possible

diagnoses, you'd probably be best off doing SCD for any one of them, anyway.

No??

I CAN tell you that you would potentially learn very little from an EEG. We have

done MANY. Sometimes, they've actually caught a seizure while the EEG was

running. That didn't change anything except to confirm what part of Katera's

brain that particular seizure was coming from. Sometimes we have had EEGs that

just show " background activity " .... which only means this is a child who is

" prone " to seizure activity. Duh! We were SEEING seizures all the time!

Then, other times we've had EEGs that showed absolutely NOTHING abnormal,

despite the fact that she was having frequent, intense seizures.... (just not

during that particular EEG test). All in all, the EEGs we've done have never

really made any difference in treatment.... but the doctors like to have them

to " get a baseline " to compare with, should the child get worse or whatever.

I will say..... EEG is a hassle, but it's not terribly invasive. Just annoying.

You will have a lot of fun trying to wash the goop out of her hair afterward

(NOT!). They don't *usually* sedate a kid for an EEG, although we did have one

done that required that when Katera was very tiny.

MRI is something that I'm sure they're wanting to do just to " rule out " any

anomalies in her brain. It's not terribly likely that you'll learn anything

from it, but that's always a possibility. Yes, it does mean sedation (probably

both oral and IV sedation).... which is always a risk. We've done four brain

MRIs.... and two spinal ones. I hope we never have to do another, but we shall

see.

you asked for it.... my .02....

Patti

Two year old needing comfirmed or not????

To any one with 2 cents to share,

We where kind of anxious to get our two year old (who has confirmed autism and

we assume CD and colitis) checked out to be confirmed by colonoscopy and

diagnosed with her form of intestinal disease.

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November 3, 2006

I don't think we are going to follow through with it. Too painful, the chance of

rupturing her spleen or her intestines. Not to mention her strange chemical

sensitivity to things. Heck, her diapers make her break out in a rash! Tylenol

sent her into a delirium once.

Alina, Like your son Kiki came to SCD very, very sick. WE are now 8 1/2 months

out. The blood and mucous are gone now. You are going to save your son so much

pain and suffering by just doing this diet as prescribe in the BTVC book. Hang

on to " his " britches " ............ you are in for a ride!

Our daughter is having a minor set back compared to the times that she laid in a

hospital bed, like your son, hooked up to an IV. I will pray for your son.

As parents, it is hard for us to not have confirmation and validation. I talked

to her pediatrician today. She said that even with confirmation that her care

would not change. I SAY WHY DO IT THEN? You may want to think of this too.

I already assume that this is Celiac and Crohns....It does not take a rocket

scientists or even a specialist to " see it " , to know that it is obviously there.

Since she has so many sensitivities and allergies to things we are just going to

have to trust that Elaine was right. She is the only one that has helped our

daughter so far. This has to say something about this SCD solution. Not to

mention the other testimonies.

I need to remember that this healing is going to be two steps forward and one

step back...a miserable dance at times.....and take time....but slowly she will

heal.

She has progressed so far from who she was 8 months ago. TRUST is not easy when

one does not have the medical community behind them, or their validation or

support.

To ease my fears, I read the testimonies today on those who have been healed by

SCD, who suffered from Crohns and Colitis...I now realize that these tests are

not all that helpful for anyone. They where not helpful to me when I had them.

Yes, Carol....this is too much for a little two year old to go through.

Insanity....I was tortured as a little one up until Elaine saved us...and it

wasn't until I did SCDiet that my pain has stopped.

Kiki is obviously sicker than me...she is going to just take longer to heal.

Confirmation is just going to have to be common sense with her.

At this time we are stopping her enzymes and we are going back to the book.

Back to intro...and back to chapter 9 and 10...and are going to pray that

again...she thrives and gains her weight back. Elaine saved her

before....Elaine can save her again! Pray for us. We can not afford the

hospital.

Thanks...Antoinette and family of five (SCD 2/06)

November 3, 2006

Dearest Antionette,

You are doing the right thing. Sometimes are children are so sick and

doctors still can't make a proper diagnoses. Testing sometimes does

not pick up celiac/crohn's until the end stages of the disease.

My kids weren't damaged enough yet, so they didn't get a diagnoses.

Maybe that is why is takes an average of 11 years to get a celiac

diagnoses. Or 38 years for my husband.

And testing has its risks, and they still might not diagnose her.

Your a greaaaaaaaaaaaaaaaat MoM!

You will make her healthy and if you run into difficulties you can't

handle ... the doctors are always there.

Just my hubble opinion.

Kind regards,

The Bond Family

November 3, 2006

You poor thing, I have been where you are. My son was dx with UC right before

he turned 3. It took a year and a hospitalization with blood transfusions for

me to really seek out a cure and try SCD. He was steroid dependent and non

responsive to them to boot.

We have had to do some other interventions to get him in a sustained remission

but he is completely off steroids now. He has been on SCD for 2 yrs. If your

doctor is conservative, he will likely want do do prednisone and sulfasalazine

or maybe Colozol or there is another one... Elaine (Breaking the Vicious Cycle)

always recommended the sulfasalazine due to its antibiotic properties so I am

glad the GI tried it first. I really do feel like it helps. And though I hate

HATE steroids, I have come to realize they are a necessary evil for him and if

we act quickly on a flare, he gets over it quicker and gets off the steroids

easily.

The few times he has flared, when it appeared steroids weren't normalizing him

after a few days, we had to do some sort of natural antifungal/antibiotic. We

use protocel (antifungal) and oil of oregano (antifungal, antiobiotic,

anti-parasite). We also still have to watch the raw fruit. But it was obvious

very very quickly that these interventions were working wonders as he came off

steroids very fast. He has only flared once in the last 1.5 yrs and it was easy

to get under control this way.

In the beginning, it took about 3 wks of steroids and SCD before I actually saw

significant improvement, so give it some time. He was scoped to confirm the

diagnosis as well, and though the few hours afterward were awful (he had to have

an upper GI after the scope and he had several accidents while we were there) he

had no pain or issues from the scope. They don't really knock them out, they

just give them something to make them not care what they are doing to them, and

they usually fall asleep. It really wasn't bad - really would have been no big

deal if they hadn't wanted the upper GI afterward - that was awful... he went

almost 24 hours without eating, poor thing, cuz the upper takes sooo long to do.

You will find lots of helpful info in here and Lucy is wonderful - she spent a

lot of time with me on the phone in the early days since there was still so much

blood. She made us feel a lot better and her advice was right on.

Robbie

mom to (UC) scd since 6/04

Two year old needing comfirmed or not????

To any one with 2 cents to share,

We where kind of anxious to get our two year old (who has confirmed autism and

we assume CD and colitis) checked out to be confirmed by colonoscopy and

diagnosed with her form of intestinal disease.

With her last lab tests, her makers came back positive for a form of IBD such

as Crohns or ulcerative Colitis. Her seizures have vanished but they still want

to do an EEG and MRI too. Great improvements with SCD but she still is

struggling in many ways.

I have been so worried about having her looked at by scope or this MRI. She is

also very sensitive to medications. They would have to nock her out with

something for both procedures. Plus she is so small. Only a mere 21 pounds,

after this last flare she had...lost some. She also has had strange reactions to

meds, that are not typical or explainable. Just like her mother.

We now know that she came to SCD sicker than we first suspected.

WE already assumed CD, since me and my husband are confirmed by bipsosy....CD,

and IBD run on both sides of the family too! But worried that her care might

change if she was confirmed. At this time without confirmation (colonoscopy)

they will do nothing for her pain...she often ends up in the hospital with

diarrhea and they call it a VIRUS. Which I know it is not.

Would it help to have validation? Dose anybody know????? What else could they

give her for IBD (Crohns or ulcerative Colitis)?????

So far SCD is the only intervention that has worked. WE will have to go back

to intro again, to get her back on track. Even if she begs for it...NO MORE RAW

FRUITS OR VEGETABLES. The poor thing.

I already suspected that she had ulcerations due to the little blood and

mucous we use to see (prior to SCD). In our first days of SCD and Pecan BREAD,

the protease in the enzymes that we wanted to try (that are frequently

recommended for ASD kids) sent her almost into the hospital proving this.

At the time I didn't know that people with ulcerations are warned not to use

enzymes with protease. Eight months out this bleeding and mucous is now gone.

Along with many of her autistic symptoms. So we are trying the enzymes again. I

think we will have to stop them during this crises. What do you think about

this?

Any input welcome. I also have been told horror stories from other mothers

whose little ones have been looked at by scope. For some this is very painful

after wards and can be dangerous to the organs...even if they do nock the child

out. We are now truly scared now to pursue this. What if she reacted to the

anesthesia??? Or they hurt her intestines??? I can't imagine how fragile she is

inside...heck her out side is so little.

I too have suffered from iatrogenic troubles (caused by the medical community)

and all their drugs and remedies. I have died almost six times now. I can not

imagine this happening to my little girl. Most doctors do not understand

chemical sensitivity and how deadly it can be. This fear is paralyzing me. Help

guys. Talk about having faith in Elaine. God, I wish I could speak to her now.

Can you guys speak for her????? OR give your best effort. I need hope now.

Lucy at Lucy's Kitchen said that Elaine use to say " Two step forward...one

step back " ....my God this is going to be a long four years healing her, if this

is the case.

Thanks, Antoinette and (cd) parents to Kiki-2 (autism and intestinal

disease/not confirmed by orthodox medicine) (SCD 2/06)

November 4, 2006

Antoinette,

I glad to hear your doughter is better now and I am so hapy to hear

you CAN choose to nOT do those endoscopies.. How do you do it?? I

mean won't I go to jail if I refuse to check him? Won't they take

Ossian away from me for this?? I don't know how the laws are in the

US.. and how they are here, in Sweden. I am just so scared they

won't give me an option, that I can't choose. I just know from my

son's doctor that they need to look into his stomach and gut, they

actually wrote it to me in a letter, the time is set to come on

Monday, no questions asked. Can I dare to refuse it? I have to find

out this. The medical care is free here, but instead I am afraid we

don't have the freedom to choose what's best for us. I am so scared

they can damage his gut, it must be so damaged already from all the

bleeding and I am scared they would do something wrong. My instincts

tell me to take my son and just run away from all the craziness -

testing, drugs and steroids...

I will try to find some information about my options. And as soon as

I got the book (it takes weeks till they come from Amazon to Sweden

sometimes) I want to start the SCD on Ossian and me. SInce I am

breastfeeding him still, I suppose I have to eat the same things as

him?

I will be thinking of your daughter and I hope she will be

completely healed very soon.

Alina

November 4, 2006

You definitely need to find out what you can do legally about refusing the

treatment. Surely you can refuse. I just can't imagine you being forced to

do what the doctor wants. At the very least, you could always call the

doctor's office, and just tell them that you've decided not to have your son

undergo the procedure. Their reaction would perhaps give you an idea of

what you can and cannot do. Yes, you must follow scd along with your son if