Kids on Long-term (was: NEW MEMBER (Celiac patient)

[Guest guest]

Kim wrote " As others have mentioned, Dr. Haas worked with children, and they are

more likely to be able to successfully resume eating polysaccharides after their

gut dysbiosis has restabilized "

What are the experiences like for kids on SCD long-term? My dd has been on 4

years for Crohn's and is really ready to stop eating this way. She just went

away for three weeks to sleepaway camp where she ate, to the best of her

ability, 80/20 (80% SCD, advocated for those on the diet long-term).

Her GI doctor advocates her staying on the diet, even though, after almost two

years med-free, she recently started Colazol, after her latest endoscopies

showed mild Crohn's throughout her GI tract. As he said, " Someone on Humira or

Remicaide would be jumping up and down for these results " . He never agreed w.

our no-med stance, but now that she is starting puberty, I would like her to

have the safety net of a low-dose med. He looks at the med at being a back-up

to the diet, since he says that the diet alone will not stop a flare (although

we've found that immediately reverting to the intro diet has helped dd every

time she had a " mini flare " ....). DD looks at it like, " if I have to be on meds

anyway, why bother w. the diet?! " .

Anyone else on this list w. a child on the diet so long????

Thanks,

Ellen

dd almost 13

scd for four years for Crohn's

[Guest guest]

What is a " dd " ? A " dear daughter " ?

The fact that your dd has been on the diet for 4 years, and is still showing

imaging proofs of Crohn's, is rather disturbing, and - to be very honest - is

very discouraging to someone like me who is on the cusp of trying this WOE (way

of eating).

I've refused all meds for over 14 years now, on the principle that if I take

meds and continue dietary experimentation, I'll imperil all attempts to

idenitify the dietary cause inasmuch as a very important variable - medication -

has been introduced. But I am and have been single, and am deliberately a

recluse, so I can perform these experiments as faultlessly as is humanly

possible. I do not slip up when experimenting.

Was she VERY strict for the first 18 months?

Thx,

.

>

> Kim wrote " As others have mentioned, Dr. Haas worked with children, and they

are more likely to be able to successfully resume eating polysaccharides after

their gut dysbiosis has restabilized "

>

> What are the experiences like for kids on SCD long-term? My dd has been on 4

years for Crohn's and is really ready to stop eating this way. She just went

away for three weeks to sleepaway camp where she ate, to the best of her

ability, 80/20 (80% SCD, advocated for those on the diet long-term).

>

> Her GI doctor advocates her staying on the diet, even though, after almost two

years med-free, she recently started Colazol, after her latest endoscopies

showed mild Crohn's throughout her GI tract. As he said, " Someone on Humira or

Remicaide would be jumping up and down for these results " . He never agreed w.

our no-med stance, but now that she is starting puberty, I would like her to

have the safety net of a low-dose med. He looks at the med at being a back-up

to the diet, since he says that the diet alone will not stop a flare (although

we've found that immediately reverting to the intro diet has helped dd every

time she had a " mini flare " ....). DD looks at it like, " if I have to be on meds

anyway, why bother w. the diet?! " .

>

> Anyone else on this list w. a child on the diet so long????

>

> Thanks,

>

> Ellen

> dd almost 13

> scd for four years for Crohn's

>

[Guest guest]

Hi ,

Believe me, we would not have kept her on for 4 years if it wasn't worth it .

DD (yes, it's " dear daughter " ) was incredibly sick when she was diagnosed (after

3 months of running from dr. to dr. and no one could seem to figure it out).

Her SED rate was 95 and her GI doctor later told me that it was a miracle she

avoided surgery at that time.

She has had normal SED and CRP rates the whole time she was med-free, and even

now, actually

Yes, she was very strict not only the first 18 months, but pretty much the whole

4 years until she went to camp. I would say that before she went to camp, she

was 95% strict SCD. We would use some things that I would never recommend to a

newbie, but that seemed reasonable after so long on the diet--like jarred apple

sauce that contains nothing but apples.

I am sorry if this post freaked you out. I was not sure whether to write it or

not, b/c I did worry that some newbies might be discouraged, but, as you know

after 14 years w. IBD, it's kind of a discouraging thing....

Be well,

Ellen

12 y/o dd scd for 4 years for crohn's

[Guest guest]

Well- let's look at the other options: where would she be if she did not do SCD?

We can't know this.

We don't have a lot of controlled studies to go on. Everyone here takes this

into consideration and decides for themselves to try SCD. When we get

improvement in symptoms- we decide to continue.

I think, , what you are asking for is some scientific proof- either through

labs, colonoscopes, and so on- to validate or invalidate SCD.

The problem here, and I am sure you understand- is that we as a group are not a

controlled study. We are not a cohort of same age/same gender/same

condition/same treatment group with a placebo group for comparison. We can't

control variations like stress, hormones (puberty and menopause for example),

and environment. We don't get the same labs or follow up studies at the same

interval. To complicate matters- some of us use meds and SCD together, so we can

not measure exactly the effect of each or any synergy between them.

We are also not all scientists with the diet- we do our best- in our own

kitchens. The only way to standardize this would be to keep us all in a hotel

with the same cook in the same kitchen.

(not a bad idea for an SCD resort vacation)

It would be great to have a controlled study, but until then, we simply have to

decide for ourselves if this is a good idea for us or not.

If you think you may benefit from SCD, then a trial is your only way to see if

it helps you.

PJ

> >

> > Kim wrote " As others have mentioned, Dr. Haas worked with children, and they

are more likely to be able to successfully resume eating polysaccharides after

their gut dysbiosis has restabilized "

> >

> > What are the experiences like for kids on SCD long-term? My dd has been on

4 years for Crohn's and is really ready to stop eating this way. She just went

away for three weeks to sleepaway camp where she ate, to the best of her

ability, 80/20 (80% SCD, advocated for those on the diet long-term).

> >

> > Her GI doctor advocates her staying on the diet, even though, after almost

two years med-free, she recently started Colazol, after her latest endoscopies

showed mild Crohn's throughout her GI tract. As he said, " Someone on Humira or

Remicaide would be jumping up and down for these results " . He never agreed w.

our no-med stance, but now that she is starting puberty, I would like her to

have the safety net of a low-dose med. He looks at the med at being a back-up

to the diet, since he says that the diet alone will not stop a flare (although

we've found that immediately reverting to the intro diet has helped dd every

time she had a " mini flare " ....). DD looks at it like, " if I have to be on meds

anyway, why bother w. the diet?! " .

> >

> > Anyone else on this list w. a child on the diet so long????

> >

> > Thanks,

> >

> > Ellen

> > dd almost 13

> > scd for four years for Crohn's

> >

>

[Guest guest]

> Kim wrote " As others have mentioned, Dr. Haas worked with children, and they

are more likely to be able to successfully resume eating polysaccharides after

their gut dysbiosis has restabilized "

>

> What are the experiences like for kids on SCD long-term? My dd has been on 4

years for Crohn's and is really ready to stop eating this way. She just went

away for three weeks to sleepaway camp where she ate, to the best of her

ability, 80/20 (80% SCD, advocated for those on the diet long-term).

>

> Her GI doctor advocates her staying on the diet, even though, after almost two

years med-free, she recently started Colazol, after her latest endoscopies

showed mild Crohn's throughout her GI tract. As he said, " Someone on Humira or

Remicaide would be jumping up and down for these results " . He never agreed w.

our no-med stance, but now that she is starting puberty, I would like her to

have the safety net of a low-dose med.

> He looks at the med at being a back-up to the diet, since he says that the

diet alone will not stop a flare (although we've found that immediately

reverting to the intro diet has helped dd every time she had a " mini flare " ....)

LDN would be the perfect low dose med backup for the diet. But apparently

your doctor won't go there. Of course, he didn't agree to your use of the

diet either apparently.

IME, colazol does hardly anything - azulfadine

would be a better choice - at least from Elaine's research, it helps

control the bacteria for some people.

Mara

> . DD looks at it like, " if I have to be on meds anyway, why bother w. the

diet?! " .

>

> Anyone else on this list w. a child on the diet so long????

[Guest guest]

IMO, there are sometimes other issues that impede healing that the SCD does not

address unless we tweak it to suit our needs. For my dd and myself, that is

candida and clostridia. We do no fruit, no honey, no sweet veggies, and we are

slowly but surely healing.

Dawn

> >

> > Kim wrote " As others have mentioned, Dr. Haas worked with children, and they

are more likely to be able to successfully resume eating polysaccharides after

their gut dysbiosis has restabilized "

> >

> > What are the experiences like for kids on SCD long-term? My dd has been on

4 years for Crohn's and is really ready to stop eating this way. She just went

away for three weeks to sleepaway camp where she ate, to the best of her

ability, 80/20 (80% SCD, advocated for those on the diet long-term).

> >

> > Her GI doctor advocates her staying on the diet, even though, after almost

two years med-free, she recently started Colazol, after her latest endoscopies

showed mild Crohn's throughout her GI tract. As he said, " Someone on Humira or

Remicaide would be jumping up and down for these results " . He never agreed w.

our no-med stance, but now that she is starting puberty, I would like her to

have the safety net of a low-dose med. He looks at the med at being a back-up

to the diet, since he says that the diet alone will not stop a flare (although

we've found that immediately reverting to the intro diet has helped dd every

time she had a " mini flare " ....). DD looks at it like, " if I have to be on meds

anyway, why bother w. the diet?! " .

> >

> > Anyone else on this list w. a child on the diet so long????

> >

> > Thanks,

> >

> > Ellen

> > dd almost 13

> > scd for four years for Crohn's

> >

>

[Guest guest]

" Of course, he didn't agree to your use of the

diet either apparently. "

No, actually he's hugely supportive of the diet and tries to get all his IBD

patients to follow it. He says that the high percentage of his patients who

follow SCD results in him having the lowest hospital readmission rate of any GI

at the hospital (I haven't asked to see the records ).

Thanks for the input. As I kind of suspected, my dd is probably one of the kids

on here who has been SCD-compliant for the longest time. Maybe someone will

come across this who doesn't come to the group very often any more and be in a

similar situation. We'll see

Thanks,

Ellen

[Guest guest]

Ellen, I don't see this as discouraging, although I wish for you that the

colonoscopy was clear. Does anyone know of a medication that is 100% effective

100% of the time in all individuals? So why are we saying that if SCD does not

produce this result that it did not do good? Perhaps you got the best results

possible for your DD in the past few years. I believe you have. She has been

healthier and better off for it, and I believe she benefits from it. I may not

have scientific proof, but I suspect the SAD would not have given you the best

results.

PJ

> " Of course, he didn't agree to your use of the

> diet either apparently. "

>

> No, actually he's hugely supportive of the diet and tries to get all his IBD

patients to follow it. He says that the high percentage of his patients who

follow SCD results in him having the lowest hospital readmission rate of any GI

at the hospital (I haven't asked to see the records ).

>

> Thanks for the input. As I kind of suspected, my dd is probably one of the

kids on here who has been SCD-compliant for the longest time. Maybe someone

will come across this who doesn't come to the group very often any more and be

in a similar situation. We'll see

>

> Thanks,

>

> Ellen

>

[Guest guest]

At 07:28 PM 8/12/2010, you wrote:

What are the experiences like

for kids on SCD long-term? My dd has been on 4 years for Crohn's and is

really ready to stop eating this way. She just went away for three weeks

to sleepaway camp where she ate, to the best of her ability, 80/20 (80%

SCD, advocated for those on the diet long-term).

My understanding is that Elaine kept her own daughter on strict SCD for

six or seven years. She had no one to consult, because Dr. Haas had

passed away, and she had not yet done her research. I believe that today,

the daughter eats about 80%SCD and 20% non-SCD.

Realize that a list like this is not really a good place to ask about

long term issues -- none of the people who started SCD when I did are

here: they've gotten well and gone on about their lives. In fact, most of

the people who started after me have gone on about their lives. I'm

here, almost 9 years on SCD, because I choose to be, because I choose to

help people as I myself was taught.

SCD looks daunting at first. But it becomes, not a diet, but a way of

life.

ly, I am glad to take my food with me for conferences and things.

Prep is a bit of a nuisance, but my food is generally better than what

they're serving!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

At 09:30 PM 8/12/2010, you wrote:

Does anyone know of a medication

that is 100% effective 100% of the time in all individuals? So why are we

saying that if SCD does not produce this result that it did not do good?

Well, I'm running off figures I looked up several years ago, but Remicade

is something like 75% effective... although when it comes to handling

fistulas, that efficacy drops to something like 49%. (Newer figures may

show different percentages.)

So that's one example.

OTOH, while medications may sometimes be necessary (and I am in no way

saying that if one finds medications helpful that one should discontinue

them), one should also consider side effects.

Tolerated foods have rather fewer side effects than any medication

known.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

meds tend to cover up what's going on and in my opinion she could lose her

intestines God forbid, in future years by covering up symptoms and eating the

SAD

eileen

>

> Kim wrote " As others have mentioned, Dr. Haas worked with children, and they

are more likely to be able to successfully resume eating polysaccharides after

their gut dysbiosis has restabilized "

>

> What are the experiences like for kids on SCD long-term? My dd has been on 4

years for Crohn's and is really ready to stop eating this way. She just went

away for three weeks to sleepaway camp where she ate, to the best of her

ability, 80/20 (80% SCD, advocated for those on the diet long-term).

>

> Her GI doctor advocates her staying on the diet, even though, after almost two

years med-free, she recently started Colazol, after her latest endoscopies

showed mild Crohn's throughout her GI tract. As he said, " Someone on Humira or

Remicaide would be jumping up and down for these results " . He never agreed w.

our no-med stance, but now that she is starting puberty, I would like her to

have the safety net of a low-dose med. He looks at the med at being a back-up

to the diet, since he says that the diet alone will not stop a flare (although

we've found that immediately reverting to the intro diet has helped dd every

time she had a " mini flare " ....). DD looks at it like, " if I have to be on meds

anyway, why bother w. the diet?! " .

>

> Anyone else on this list w. a child on the diet so long????

>

> Thanks,

>

> Ellen

> dd almost 13

> scd for four years for Crohn's

>