IBD kids?

[Guest guest]

Are there any parents/family members of IBD kids posting here?

My 10-year-old niece is in bad shape with IBD (UC they think though

they say they are never 100% sure it's not Crohn's) and

nothing " conventional " (i.e., drugs) seems to be working. They are

talking surgery now to remove her colon.

I came upon the SCD while researching IBD on the internet and I'm

trying to convince my sister that it is worth a try. She took a

look at the list of " allowed and disallowed " foods on the scdiet.org

site and said, " I can't see her doing this, there's like nothing to

eat " . (Apparently my niece doesn't like raw or frozen vegetables,

only canned, and does not like cheese unless it's grilled on nice

white bread with plenty of butter).

I'm a little frustrated all around -- by this illness, by the sight

of my niece who is sick and wasting away day by day, by the doctors

being unable to do anything about it, and now because I don't

understand how a 10-year-old can dictate her diet in a life and

death situation like this.

It would be nice to find people who are experiencing this (I know

Elaine herself did!) and maybe get some ideas regarding how to go

about " selling " this diet to a kid around my niece's age. *Any*

help would be greatly appreciated.

Thank you in advance.

[Guest guest]

> Are there any parents/family members of IBD kids posting here?

I don't know if this helps, but I was diagnosed with CD at 16, and I

wish to God my mother had known about SCD back then instead of finding

this 16 miserable years later! It is very hard to convince people of

something they don't want to learn about, but it's hard for me to

believe that someone would choose removing a 10 year old's colon over

her grilled cheese sandwhiches! If I could be of help in any way, please

let me know. I knew what it was like to suffer from this horrible

disease as a teenager, at least.

Debora

SCD 6 months

CD 16 years

[Guest guest]

My daughter's history is too long to repeat but has IBD. I agree that a 10

year shouldn't be allowed to dictate her own diet. SCD has been working for my

daughter since November. She complains about the food and has melt downs in

general about the stress of illness but...she has gained 3 pounds, has grown and

inch and her hair has stopped falling out since she has been on SCD in

November. It seems, though, without the parents on board, the options are slim

for

your niece. When we asked her GI in Boston about dietary interventions, we were

told that it would be too difficult to pinpoint her triggers. I think the

medical community does has to deal with issues of patient compliance which is

something they can't control with diet as well as with medicine and surgery.

Good luck to your whole family.

[Guest guest]

I'm the mom of a 4 year old, n, with UC.

I agree with the last post that said that the parents need to be on

board with this for the longer term on SCD. However, perhaps if your

niece started on SCD, and saw some of her symptoms start to

disappear, this might give the motivation for her, and her parents,

to continue.

My n was diagnosed with UC at 22 months old. Immediately, a

very good friend told me about SCD, and I bought the book, Breaking

the Viscious Cycle. Well, that book sat on my bedside table for four

months. It was only when the GI prescribed prednisone and said that

n would soon be hospitalized, that I was forced into a corner

and started SCD. I had researched the effects that prednisone and

many other IBD drugs could have on his young body. I also found out

that removing his colon might not be the end - he could still develop

Crohn's. Without a colon, he might still be going to the bathroom 8

times a day. There could be complications with his new pouch; etc.

etc. I realized that we had to try a total systemic fix, not just

cutting out more and more pieces of his body.

I was skeptical about SCD, but thought we had nothing to lose by

trying. We decided to give it a go, with no cheating, for one

month. Perhaps you could convince your niece, and possibly your

sister, to try it for one month. Well, in the first week, we saw a

reduction in gas and pain, the next week we saw a reduction from

going about 12 times a day to 3 -4 times, then - the miracle on day

eighteen, formed stool,no more blood, and no symptoms! He was in

remission.

Now, there is much more to the story. Two months later, n

relapsed, though his symptoms weren't nearly as bad as they were

before. It took another 16 months on SCD before he became totally

symptom-free again, and he remains so seven months later. The point

is, that initial decision to try SCD for one month showed us that SCD

worked for n, and motivated us to continue. Also, it sure is

motivation to see a healthy, strong, energetic little boy with no

pain and no symptoms of his UC. His GI initially said that n

had spontaneously gone into remission, since that is the nature of

UC. However, two years later, she now reluctantly admits that

n " appears to respond to dietary manipulation " , and that we

should continue doing what we're doing.

Are you in a position to offer to help with the introductory diet

i.e. making the chicken soup, etc.? Starting SCD is indeed a time

and effort commitment. If your niece is too weak, she may not even

be able to do the introductory diet, and may have to begin by cutting

out SCD illegal foods. The best advice I had was to start with where

n was at. We started on the intro diet (it's easier to control

a 2 year old - tee, hee), and started adding foods, but then n

decided that he would only eat bananas, yogourt, and honey. I was

scared to death that my then 2 year old would starve and be

malnourished. But, obviously he didn't. Perhaps if your niece won't

or can't do the intro diet, find an SCD-legal food that she does

like, and start from there.

If she does decide to start, it helps to get support, daily in many

cases (like mine!), from parents and family members who have been

there. It sure wasn't easy! But, it sure was worth the effort!!!

Good luck. And your niece is very lucky to have such a committed

aunt like you!

Suzan

mom of n, 4 yrs old, UC diagnosed Aug 2001, SCD since Dec 2001

> Are there any parents/family members of IBD kids posting here?

>

> My 10-year-old niece is in bad shape with IBD (UC they think though

> they say they are never 100% sure it's not Crohn's) and

> nothing " conventional " (i.e., drugs) seems to be working. They are

> talking surgery now to remove her colon.

>

> I came upon the SCD while researching IBD on the internet and I'm

> trying to convince my sister that it is worth a try. She took a

> look at the list of " allowed and disallowed " foods on the

scdiet.org

> site and said, " I can't see her doing this, there's like nothing to

> eat " . (Apparently my niece doesn't like raw or frozen vegetables,

> only canned, and does not like cheese unless it's grilled on nice

> white bread with plenty of butter).

[Guest guest]

Hi Genna's mom,

I know how frustrating it is to see loved ones choose " white bread " over health.

There have been children on the diet and you may be able to connect with them

through either the Long Island list, SCD info group or Gay may be help you link

up to those whose children are on the diet. Her contact info is Grammy Bauer

grammy_bauer@...

Also at amazon.com you can scroll down through reviews of Elaines book. There

are over 117 at the moment.

Hope this helps.

Sheila, SCD 36 mos, UC 20 yrs

mom of SCD 20 mos

----- Original

Are there any parents/family members of IBD kids posting here?

My 10-year-old niece is in bad shape with IBD