Re: Parents of kids with Colitis/Chron's-please read

[Guest guest]

We have one child like that in our Toronto SCD group. n and he has done

very very well on the diet. I have his mother's email address in my files

and will forward your email to her. Her name is .

> Hi,

> I am trying to determine how  many parents on this board have kids with just

> colitis/chron's. 

>

Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

[Guest guest]

Sherrie:

My daughter has colitis and autism. I think alot of the

PDD/autistic kids on this list are in the same boat, which is why we

are all here. In my humble opinion, they are all the same as far as

gut healing goes. Our kids just are unlucky enough to also have

neurological problems along with it. Although if you read the

History of Celiac Disease in Elaine's book, you have to wonder

whether in some cases it is all the same thing, with some kids

exhibiting autistic symptoms as a result.

I don't know. What I do know is that this diet is working for my

daughter (who is three). She has been on it since December 1, 2003

and it has improved her gut issues and her autistic symptoms.

,

Dad to Kara (3, autistic and SCD for almost 2 months)

> Hi,

> I am trying to determine how many parents on this board have kids

with just colitis/chron's. I am finding lots of great information

from this list and someday will hopefully feel confident enough to

respond to others. In the meantime however, I am finding it hard

sometimes to filter through some of the info as it usually pertains

to children with autism. I am hoping to find a few parents out

there to exchange ideas/info/questions with that are dealing

strictly with Chron's/Colitis.

>

> As for us, Ilana is 3 1/2 and has ulcerative colitis. We are

heavy into a flare right now..after great success on SCD for the

last 3 months.

>

> Please email me privately if you want to exchange emails/support

off-line. Thanks.

>

> Sherrie

>

>

>

[Guest guest]

,

Yes I absolutely agree that the gut issues seem to be the same and apologize

if I came across differently. I am just having trouble filtering out some

of the different implementaions of the diet and trying to understand what of

the tons of info is relevent. From abbreviations, to words like stimming,

testing for metal toxicity, etc all new stuff that I have to look up and

mostly not direcly relevent (though hugely interesting to me). I am still

learning about colitis and trying to understand what truly defines a flare,

what is classified as remission, etc, etc. Those types of questions seem

not to be appropriate for the board, but are probably better addressed

offline.

I am glad the diet is working for you. We are officially 3 months on the

diet and have had 2 good months, but are now in a bad flare with

blood/mucous/pain. I am hoping this is the dreaded 3 month flare and that

we will come out of this healthier and stonger. But it is still scary to

watch a small child go through this not knowing for sure when and if this

will turnaround. I try to remain hopeful and am definitely staying SCD

compliant.

I would be interested to know what enzymes or supplements you are using if

any and how you made the choice/decision.

Thanks.

Sherrie

Re: Parents of kids with Colitis/Chron's-please read

> Sherrie:

>

> My daughter has colitis and autism. I think alot of the

> PDD/autistic kids on this list are in the same boat, which is why we

> are all here. In my humble opinion, they are all the same as far as

> gut healing goes. Our kids just are unlucky enough to also have

> neurological problems along with it. Although if you read the

> History of Celiac Disease in Elaine's book, you have to wonder

> whether in some cases it is all the same thing, with some kids

> exhibiting autistic symptoms as a result.

>

> I don't know. What I do know is that this diet is working for my

> daughter (who is three). She has been on it since December 1, 2003

> and it has improved her gut issues and her autistic symptoms.

>

> ,

> Dad to Kara (3, autistic and SCD for almost 2 months)

>

>

>

> > Hi,

> > I am trying to determine how many parents on this board have kids

> with just colitis/chron's. I am finding lots of great information

> from this list and someday will hopefully feel confident enough to

> respond to others. In the meantime however, I am finding it hard

> sometimes to filter through some of the info as it usually pertains

> to children with autism. I am hoping to find a few parents out

> there to exchange ideas/info/questions with that are dealing

> strictly with Chron's/Colitis.

> >

> > As for us, Ilana is 3 1/2 and has ulcerative colitis. We are

> heavy into a flare right now..after great success on SCD for the

> last 3 months.

> >

> > Please email me privately if you want to exchange emails/support

> off-line. Thanks.

> >

> > Sherrie

> >

> >

> >

[Guest guest]

Hi Sherrie,

My son, n, also went through the " three month flare " about 2 1/2

months after starting SCD.

Try going back to the intro diet. If at all possible, try sticking

to chicken soup, chicken soup, chicken soup! It is very healing.

Ilana is very young, so try for only a few days. I am wondering - is

she okay even with the carrots in the soup? Then slowly, very

slowly, add in other foods from the intro diet. Then decide which

food you will add in next. Have you noticed over the past three

months what foods Ilana does better on and which she does worse on?

For example, I found that n did better on zucchini and green

beans than butternut squash or carrots.

Sherrie, I'd try the above before adding any supplements of any kind.

Excactly what is Ilana eating currently in a typical day? What

medication is she on? Is she eating yoghurt?

Hang in there, and keep getting support! We know how tough it is

watching your child in pain day in and day out.

Suzan

mom of n, 4 years old, neurotypical, ulcerative colitis

diagnosed at 22 months old, SCD since 26 months old, 500 mg/day

sulfasalazine, now symptom free

>

> I am glad the diet is working for you. We are officially 3 months

on the

> diet and have had 2 good months, but are now in a bad flare with

> blood/mucous/pain. I am hoping this is the dreaded 3 month flare

and that

> we will come out of this healthier and stonger. But it is still

scary to

> watch a small child go through this not knowing for sure when and

if this

> will turnaround. I try to remain hopeful and am definitely staying

SCD

> compliant.

>

> I would be interested to know what enzymes or supplements you are

using if

> any and how you made the choice/decision.

>

> Thanks.

> Sherrie

>

[Guest guest]

Hi Sherrie,

doesn't have an official diagnosis, but he had obvious intestinal

problems. When I started the diet almost three years ago I got rid of a lot of

illegals in the kids diets but they were not 100%. continued to have 5-8

smelly, mushy bm's every day. Eventually when my weight and health stabilized

we decided to put the whole family 100% on the diet. It took a while but now

has 1-2 perfect trophies a day. I believe that in time he would have

eventually been diagnosed with IBD, UC etc.

So I can't specifically help you with a child who has chrohns or colitis, I have

personal experience with it. I may be able to help with some questions.

Also you write that Ilana has been on the diet for three months. It is possible

that she is going through the " three month flare " . I had a bad flare at three

months also (had to go to the ER - it's a long story). A lot of people on the

adult SCD list (longisland etc.) report a three month flare. If you have

questions ask away.

Sheila, SCD 35 mos UC 20 yrs

mom of SCD 20 mos

Hi,

I am trying to determine how many parents on this board have kids with just

colitis/chron's. I am finding lots of great information from this list and

someday will hopefully feel confident enough to respond to others. In the

meantime however, I am finding it hard sometimes to filter through some of the

info as it usually pertains to children with autism. I am hoping to find a few

parents out there to exchange ideas/info/questions with that are dealing

strictly with Chron's/Colitis.

As for us, Ilana is 3 1/2 and has ulcerative colitis. We are heavy into a

flare right now..after great success on SCD for the last 3 months.

Please email me privately if you want to exchange emails/support off-line.

Thanks.

Sherrie