need helpf for 13 y.o. with Crohn's

[Guest guest]

My 13 y.o. son has Crohn's (no ASD issues). He started on the diet late

last summer while taking steroids. Since he'd improved so much and was

starving due to the Prednisone we never went through a real intro period,

though waited over a month for raw veggies, cabbage, whole nuts. He's

currently taking Pentasa and azathioprine. He's had a really hard time

sticking with the diet - misses bread tremendously. (And yes, I know of

all the wonderful recipes. He can put up with a few, though I haven't

found a true dairy free one; and he doesn't like the Digestive Wellness

one we tried.)

He's willing to try it again because he's having a serious flare -D with

blood, a few times a day, achiness. His GI wants him to go on low dose,

short term steroids. (It would have to be prednisone rather than a milder

steroid because the involvement starts high and is widespread.) Low dose

and short term IF he goes on Remicade also. This really scares me.

Remicade hasn't been used much for children and does carry increased

risks of lymphomas. Also, my GI's schedule would emphatically have him on

the Remicade for several years, every 8 weeks (or more frequently if

needed) regardless of progress.

If anyone has any insights I would appreciate it tremendously. I think

he's scared enough to give the diet a real shot again. I hope so. It's

not easy this time because we are doing the intro diet. I honestly don't

now how slowly I'll be able to introduce other foods after this first

week, other than obvious culprits like whole nuts, raw veg., etc.

And if anyone knows of any GIs in SE Michigan (maybe even OH as far as

Toledo) who not only will put up with SCD but seriously endorse it,

please let me know. At 13 he sees a ped. GI but could probably see an

adult too.

Thanks and take care, Fay

[Guest guest]

Hi Fay,

> He can put up with a few, though I haven't

> found a true dairy free one; and he doesn't like the Digestive

Wellness

> one we tried.)

Have you tried the nut free dairy free bread at

http://health.groups.yahoo.com/group/pecanbread/files/ ?

If you use a mix of vegetables and puree them the bread is very

light. It is very good lightly toasted.

> He's willing to try it again because he's having a serious flare -D

with

> blood, a few times a day, achiness.

I am so sorry to hear that he is in a flare - I know how devastating

that can be.

His GI wants him to go on low dose,

> short term steroids. (It would have to be prednisone rather than a

milder

> steroid because the involvement starts high and is widespread.) Low

dose

> and short term IF he goes on Remicade also. This really scares me.

> Remicade hasn't been used much for children and does carry increased

> risks of lymphomas. Also, my GI's schedule would emphatically have

him on

> the Remicade for several years, every 8 weeks (or more frequently if

> needed) regardless of progress.

>

> If anyone has any insights I would appreciate it tremendously. I

think

> he's scared enough to give the diet a real shot again. I hope so.

It's

> not easy this time because we are doing the intro diet.

I think starting with the intro diet and slowly adding food is really

your best bet. Keeping a food journal/chart that tracks food, number

of bowel movements/day, appearance of blood in stool, aches and pain

rated on a scale of 1-10 etc. would help him mark progress. Since he

is older. I found a chart really helpful. It helped me too see how

far I had come and track improvements, foods I wasn't ready for etc.

You might find the stages chart helpful:

http://www.pecanbread.com/foodprep.html#beyond

Sheila

[Guest guest]

Hi Fay,

> He can put up with a few, though I haven't

> found a true dairy free one; and he doesn't like the Digestive

Wellness

> one we tried.)

Have you tried the nut free dairy free bread at

http://health.groups.yahoo.com/group/pecanbread/files/ ?

If you use a mix of vegetables and puree them the bread is very

light. It is very good lightly toasted.

> He's willing to try it again because he's having a serious flare -D

with

> blood, a few times a day, achiness.

I am so sorry to hear that he is in a flare - I know how devastating

that can be.

His GI wants him to go on low dose,

> short term steroids. (It would have to be prednisone rather than a

milder

> steroid because the involvement starts high and is widespread.) Low

dose

> and short term IF he goes on Remicade also. This really scares me.

> Remicade hasn't been used much for children and does carry increased

> risks of lymphomas. Also, my GI's schedule would emphatically have

him on

> the Remicade for several years, every 8 weeks (or more frequently if

> needed) regardless of progress.

>

> If anyone has any insights I would appreciate it tremendously. I

think

> he's scared enough to give the diet a real shot again. I hope so.

It's

> not easy this time because we are doing the intro diet.

I think starting with the intro diet and slowly adding food is really

your best bet. Keeping a food journal/chart that tracks food, number

of bowel movements/day, appearance of blood in stool, aches and pain

rated on a scale of 1-10 etc. would help him mark progress. Since he

is older. I found a chart really helpful. It helped me too see how

far I had come and track improvements, foods I wasn't ready for etc.

You might find the stages chart helpful:

http://www.pecanbread.com/foodprep.html#beyond

Sheila