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Re: Back on SCD

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Liz,Hard lessons for kids to learn, but I am glad that he realizes that it helps and the junk food just isn't worth it. It will also help him as he will hopefully easily apply this lesson to other areas of his life as he matures.If the LDN doesn't seem to work or causes other problems (other than strange dreams and sleeplessness for the first couple of weeks), he could have a yeast problem --LDN and yeast do NOT work together. My husband ran into this and is trying to address the yeast issue now and will try LDN again later.AmeliaTo: BTVC-SCD Sent: Thu, May 13, 2010 6:32:30 AMSubject: Back on SCD

My 15 year old son (UC) was off SCD for a few days and wants to go back on. His bleeding has increased and it has to be the diet. I was only going to add rice in, to see how it went, but he ate a large spoonful of gluten free cookie dough, some chips and salsa and probably other stuff that I don't know about. Anyway, he knows the diet helps, so he'll be good about sticking to it.

I'm not sure what to do about the supplements the doctor wants him to take. They aren't legal, but she says that they've helped other patients with UC. She ordered a prescription of LDN that should be ready by Friday, so he'll start that too (3 mg.)

Liz

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What is the supplements? Maybe there are legal substitutes?

PJ

>

> Liz,

>

> Hard lessons for kids to learn, but I am glad that he realizes that it helps

and the junk food just isn't worth it. It will also help him as he will

hopefully easily apply this lesson to other areas of his life as he matures.

>

> If the LDN doesn't seem to work or causes other problems (other than strange

dreams and sleeplessness for the first couple of weeks), he could have a yeast

problem --LDN and yeast do NOT work together. My husband ran into this and is

trying to address the yeast issue now and will try LDN again later.

>

> Amelia

>

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Thu, May 13, 2010 6:32:30 AM

> Subject: Back on SCD

>

>

> My 15 year old son (UC) was off SCD for a few days and wants to go back on.

His bleeding has increased and it has to be the diet. I was only going to add

rice in, to see how it went, but he ate a large spoonful of gluten free cookie

dough, some chips and salsa and probably other stuff that I don't know about.

Anyway, he knows the diet helps, so he'll be good about sticking to it.

>

> I'm not sure what to do about the supplements the doctor wants him to take.

They aren't legal, but she says that they've helped other patients with UC. She

ordered a prescription of LDN that should be ready by Friday, so he'll start

that too (3 mg.)

>

> Liz

>

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LIz,

I can't remember if he has tried the vitamin E enemas to stop the bleeding

with any success or not - just a reminder that it might help because these

things can slip our minds at time.

Also, I can remember whether he had a colonoscopy or not.

Hope he feels better soon.

Mara

> My 15 year old son (UC) was off SCD for a few days and wants to go back on.

His bleeding has increased and it has to be the diet. I was only going to add

rice in, to see how it went, but he ate a large spoonful of gluten free cookie

dough, some chips and salsa and probably other stuff that I don't know about.

Anyway, he knows the diet helps, so he'll be good about sticking to it.

>

> I'm not sure what to do about the supplements the doctor wants him to take.

They aren't legal, but she says that they've helped other patients with UC. She

ordered a prescription of LDN that should be ready by Friday, so he'll start

that too (3 mg.)

>

> Liz

>

>

>

> ------------------------------------

>

>

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Hi Carolyn

So sorry to hear it ;(. How long was he on SCD before trying these foods? Last

year, after three years SCD, we tried rice w. my dd (organic brown rice) and,

after a few weeks of having small amounts a few times a week, she was feeling

crummy. I searched and searched around to understand this more, and found out

that rice and corn are two things that Elaine said were REALLY bad to eat (not

sure if she said bad for folks w. IBD or bad for everyone), but that made a lot

of sense to me--my dd eats the occasional meal off SCD and it is usually pizza

or mac & cheese or some other bread/dairy combo and has never had a problem.

The rice might have caused a problem just b/c of how often she had it compared

to, say, the pizza. So now when she goes off SCD for the occasional meal, she

does not eat any rice or corn products (hey, now that I think of it, you said

your ds also had tortilla chips!)

That's great that your dr. prescribed LDN. I'd love to hear how that goes for a

teen.

Hope he feels better soon,

Ellen

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

med-free for 1.5 years

>

> My 15 year old son (UC) was off SCD for a few days and wants to go back on.

His bleeding has increased and it has to be the diet. I was only going to add

rice in, to see how it went, but he ate a large spoonful of gluten free cookie

dough, some chips and salsa and probably other stuff that I don't know about.

Anyway, he knows the diet helps, so he'll be good about sticking to it.

>

> I'm not sure what to do about the supplements the doctor wants him to take.

They aren't legal, but she says that they've helped other patients with UC. She

ordered a prescription of LDN that should be ready by Friday, so he'll start

that too (3 mg.)

>

> Liz

>

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> So sorry to hear it ;(. How long was he on SCD before trying these foods?

Last year, after three years SCD, we tried rice w. my dd (organic brown rice)

and, after a few weeks of having small amounts a few times a week, she was

feeling crummy. I searched and searched around to understand this more, and

found out that rice and corn are two things that Elaine said were REALLY bad to

eat (not sure if she said bad for folks w. IBD or bad for everyone), >

> That's great that your dr. prescribed LDN. I'd love to hear how that goes for

a teen.

>

> Hope he feels better soon,

Thank you! He was on SCD for only 9 months. He was off for 4 days and is now

back on. I'm not sure if it was the rice, corn, sugar, sorghum flour (cookies)

or chocolate or maybe all of them. At any rate, he wants to go back on SCD

because he believes that it was helping. I'll be sad if he can't have rice ever

again - I've been gluten free for 14 years and rice has been a staple around

here.

I'm doing SCD with him, so he doesn't have to do it alone, but all the breads

and goodies are so fattening! I gained 8 pounds without trying. I guess I'll be

doing it with no nuts and it will just be a boring diet for me, but if it helps

him it's worth it.

He's nervous about the LDN.

Liz

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