Need input from experienced SCD parents of kids with Crohn's Disease- HELP

[Guest guest]

Would love to hear from those who have put their children with Crohn's

on this diet. My son is 12 yrs, diagnosed at 11 years and has not had

success with any meds including Remicade -- can't get him off steroids

without getting deathly ill. Started SCD yesterday.

[Guest guest]

>hi, my son also has crohn's. he was diagnosed in 9/05 and started

on SCD 1/07. so far it is working wonders. we had no luck with

6mp, asacol, prednisone. in fact i think that they actually made

his pain worse. we noticed a difference in his stools and level of

pain within 2 weeks of starting the diet. previously we had been on

steroids for 1 year. he is currently medication free. i am still

new at this but would be happy to talk to you anytime or try to

answer any questions.

good luck

jill and ethan (age 9 crohns SCD 1/07).

> Would love to hear from those who have put their children with

Crohn's

> on this diet. My son is 12 yrs, diagnosed at 11 years and has not

had

> success with any meds including Remicade -- can't get him off

steroids

> without getting deathly ill. Started SCD yesterday.

>

>

[Guest guest]

We have been using the SCD for about 7 years, with many set backs. I

don't claim to know it all but have a few tricks up my sleve. If you

need ideas or help I will do my best.

and Cole

[Guest guest]

Welcome to the group ,

<< Would love to hear from those who have put their children with

Crohn's > on this diet. My son is 12 yrs, diagnosed at 11 years and

has not had > success with any meds including Remicade -- can't get him

off steroids > without getting deathly ill. Started SCD yesterday. >>

Many people have trouble getting off steroids. If you would like a

suggested weaning schedule let me know at sheilat@...

What dose of steroids is he at? Which steroid is he using:

prednisone, prednisolone etc..?

Sheila, SCD Feb. 2001, UC 23 yrs

mom of and

[Guest guest]

Ella (age 5) was diagnosed Oct 05 with UC then Crohns on return of

the biopsies. She had lots of ear infections and excema.

Bleeding and abnormal mucosa was seen in the endoscopy mainly in the

Sigmoid Colon, Descending Colon, Transverse Colon stopping at the

Hepatic Flexure. A few days later we started the SCDiet at the

same time as the prednisolone. After the wean of pred (that took

one month) we dropped all meds (severe tummy aches) and went solely

SCDiet. Many SCDiet foods she could tolerate while taking the

prednisone she could not after it. I've read that it takes about as

long to start making it naturally again in your body as it does being

on it. This was said by Ahmed Prassad author of Collitis and Me who

was on several prednisone tapers until finding the Scdiet. We went

right to the intro diet again and basic foods. She weighed 30lbs at

diagnosis and is now 36.5lbs 16 months later. She is still small

for her age but she is growing.

With so much diarhea our focus was on formed stools. It was a very

high protein/simple SCDiet carb mix that worked for her. Tolerance

for even simple legal sugars was low. She couldn't tolerate honey,

nuts or yogurt. With an allergy to diary no DCCC either. Cooked

carrots gave her problems. Too much of the applesauce or pear sauce

loosened the stools. Tenderloin Steak, chicken thighs, turkey, and

eggs were very binding for her. Banana she could tolerate and was

binding too. We fed her the chicken soup recipe with added

butternut squash as often as we could. Her appetite was voracious

for the same foods. It was a very difficult time trying to figure

out what was die off, what was intolerance, what was food allergy.

It was in the fall so colds, viruses were more then usual also. It

was like jumping thru the ring of fire as one SCDer put it. For us,

we had to trust this limited diet without GI approval and

acceptance. It seemed like forever to move onto the next food.

People who shared their experience with us like Gertrude Snicklegrove

and the counselors here were invaluable.

We went by Dr. Gee's statement, " only feed what you

digest….everything else does harm!. " Formed stools were our

guide. If it loosened up we'd slow down on the fruit sauces or

eliminate them altogether for a day or two. In hindsight I wished

I'd just given her mineral water with a squeeze of lemon instead of

the watered down grape juice. This was our path….we didn't use

enzymes that may have sped things up as far as tolerance.

Many many thanks go to Sheila Trenholm one of our conselors who

helped us realize to go slow and change one thing at a time. Get a

baseline. Then add to it. For us were on very shakey soil with a

damaged gut. Many say this this not a high protein diet..give

balance. For us it truly was a high protein diet at first. A

balanced diet would throw us off. We now look at it as a

PROGRESSIVE diet with a starting point that needed protein for its

binding nature, the iron in red meat since Ella was anemic, the

vitamins A, D, E, and K that animal fat provides. The soup, some

easy cooked down veggies, banana also gave us needed calories and a

little bit of easy to digest fiber.

Ella's C Reactive Protein went from a whopping 18 down to 1.79 (0-7

is the normal range). It took us several months but her inflammation

left her body along with her out of balanced flora and many of the

nasty microbes that were causing this. They are now in check. As

this inflammation went down her tolerance for foods increased. Her

tolerance for simple sugars increased as well. Ella eats a much

broader range of legal SCDiet foods. She can tolerate a lot of

veggies (some raw like cucumber without skin, seeds), raw fruit,

honey and is up to 9-12 Tablespoons of extremely dripped (2-3 days)

goat yogurt. Her stools are perfectly formed 1 x day to 1 x

1.5days. This diet has been everything advertised and to quote our

GI who didn't believe in it… " She is our patient that is doing the

best! …I ordered 6 books for our office and gave your copy that you

gave to me to another set of parents "

Breaking the Viscious Cycle mentions that some kids are very

sensitive to even legal simple sugars early in the diet. This was

our Ella. One parent that counseled us said… All Eskimos eat is

meat. And it won't be forever. …. Salt, juicy steak is

delicious. Chicken thighs are tender and fat which is very

flavorfull. Ella loved it but hardly ever ate meat before this

diet. A post came along several months into our journey.

Following stool formation and feed only digestable foods…we were

doing a diet protocol like Dr. Natasha McBride's anti diarrheal diet

protocol posted by Kayla Wildman for her child a ways back. No

fruit, honey, nuts, nut butters. until you get firmed stools with

it. I believe she said to go two weeks with this and then try one

food at a time. It can be searched within the files.

Gertrude Snicklegrove's Bone Broth recipe in the archives is great

for getting the matrix of minerals such as calcium, magnesium,

glucosomine, etc. that are the easiest to digest while dairy/yogurt

was not tolerable to us early (maybe due to lots of mistakes with

yogurt) in the diet this bone broth provided some of those needed

minerals. This helped in addition to the chicken soup recipe within

BTVC.

We are going on 17 months now on the SCDiet. Ella eats the

following broad range of foods now… Progress does happen….Tolerance

does improve. We are still in the process of healing. Too much raw

pear will still loosen her stool from the goal of toothpaste

consistency. Her excema is gone which we struggled with for many

months. I think it was related to dairy as well. Dripping the

yogurt helped tremendously in terms of tolerance. Some have said

there is still lactose (very small amounts) and galactose in the

whey. To drip it is to rid the yogurt of even more I suspect.

Ella was not allergic to casein but was on the RAST test to dairy.

The research for crohns that fits within this theory of this Diet

points to a Mycobacterium Paratuberculosis (MAP)

overgrowth/infection. Biofilm research suggests partners such as

candida yeast and others joining it. MAP has been found in Milk.

(It lives beyond standard pasteurization) Ella drank lots and lots

of milk before her diagnosis. Even the smallest amount of food from

a milk source for this MAP may cause a reaction I suspect. That is

just my supposition. There is other research that I have come across

that suggests some kids lack the ability to digest galactose--A

chromosome issue. Ultimately…what Ella can digest and not react to

is truth. Extremely dripped yogurt seemed to help us a lot. It

could've also been our layoff from it for several months that allowed

additional healing. Or a combination of the two. Once highly

reactive to any dairy she not tolerates Ghee and yogurt.

One parents findings,

Brent McKinney Father of Ella age 5 with Crohns. SCDiet 16

months. No meds.

Currently Ella's Diet looks a lot different then our first months:

Supplements:

Cod Liver Oil, Fish Oil

Kirkmans L. Acidophilus

Dripped Goat Yogurt Three strains Dairy Free starter GI pro

Meats:

Bone Broths…all types…chicken, beef, turkey bones

Wild Alaskan Salmon

Wild Alaskan Halibut

Organic Hamburger, Steak

Free range Chicken, Turkey—including the skin which she loves.

Lamb

Buffalo

Eggs

Cooked Veggies:

Califlower—steamed and pureed

Asparagus

Green Beans—

Spinach

Butternut Squash

Brussel Sprouts

Cucumber

Carrots

Onion

Garlic

Ripe Fruits:

Banana

Papaya

Pinneapple

Mango

BlueBerries

Raspberries

Peaches

Organic unsweetened Cocunut flakes

Nuts:

Organic Pecan butter

Occasional Almond flour …small use here a very advanced product

Manuka Honey 10+

Drink:

Mineral Water high in content with magnesium, calcium

Coconut oil

Ghee

Extra Virgin Olive Oil

[Guest guest]

>

> Ella (age 5) was diagnosed Oct 05 with UC then Crohns on return of

> the biopsies. She had lots of ear infections and excema.

> Bleeding and abnormal mucosa was seen in the endoscopy mainly in

the

> Sigmoid Colon, Descending Colon, Transverse Colon stopping at the

> Hepatic Flexure. A few days later we started the SCDiet at the

> same time as the prednisolone. After the wean of pred (that took

> one month) we dropped all meds (severe tummy aches) and went solely

> SCDiet. Many SCDiet foods she could tolerate while taking the

> prednisone she could not after it. I've read that it takes about

as

> long to start making it naturally again in your body as it does

being

> on it. This was said by Ahmed Prassad author of Collitis and Me

who

> was on several prednisone tapers until finding the Scdiet. We

went

> right to the intro diet again and basic foods. She weighed 30lbs

at

> diagnosis and is now 36.5lbs 16 months later. She is still small

> for her age but she is growing.

>

> With so much diarhea our focus was on formed stools. It was a

very

> high protein/simple SCDiet carb mix that worked for her.

Tolerance

> for even simple legal sugars was low. She couldn't tolerate honey,

> nuts or yogurt. With an allergy to diary no DCCC either. Cooked

> carrots gave her problems. Too much of the applesauce or pear

sauce

> loosened the stools. Tenderloin Steak, chicken thighs, turkey,

and

> eggs were very binding for her. Banana she could tolerate and was

> binding too. We fed her the chicken soup recipe with added

> butternut squash as often as we could. Her appetite was voracious

> for the same foods. It was a very difficult time trying to figure

> out what was die off, what was intolerance, what was food allergy.

> It was in the fall so colds, viruses were more then usual also.

It

> was like jumping thru the ring of fire as one SCDer put it. For

us,

> we had to trust this limited diet without GI approval and

> acceptance. It seemed like forever to move onto the next food.

> People who shared their experience with us like Gertrude

Snicklegrove

> and the counselors here were invaluable.

>

> We went by Dr. Gee's statement, " only feed what you

> digest….everything else does harm!. " Formed stools were our

> guide. If it loosened up we'd slow down on the fruit sauces or

> eliminate them altogether for a day or two. In hindsight I wished

> I'd just given her mineral water with a squeeze of lemon instead of

> the watered down grape juice. This was our path….we didn't use

> enzymes that may have sped things up as far as tolerance.

>

> Many many thanks go to Sheila Trenholm one of our conselors who

> helped us realize to go slow and change one thing at a time. Get a

> baseline. Then add to it. For us were on very shakey soil with

a

> damaged gut. Many say this this not a high protein diet..give

> balance. For us it truly was a high protein diet at first. A

> balanced diet would throw us off. We now look at it as a

> PROGRESSIVE diet with a starting point that needed protein for its

> binding nature, the iron in red meat since Ella was anemic, the

> vitamins A, D, E, and K that animal fat provides. The soup, some

> easy cooked down veggies, banana also gave us needed calories and a

> little bit of easy to digest fiber.

>

> Ella's C Reactive Protein went from a whopping 18 down to 1.79 (0-

7

> is the normal range). It took us several months but her

inflammation

> left her body along with her out of balanced flora and many of the

> nasty microbes that were causing this. They are now in check.

As

> this inflammation went down her tolerance for foods increased. Her

> tolerance for simple sugars increased as well. Ella eats a much

> broader range of legal SCDiet foods. She can tolerate a lot of

> veggies (some raw like cucumber without skin, seeds), raw fruit,

> honey and is up to 9-12 Tablespoons of extremely dripped (2-3 days)

> goat yogurt. Her stools are perfectly formed 1 x day to 1 x

> 1.5days. This diet has been everything advertised and to quote

our

> GI who didn't believe in it… " She is our patient that is doing the

> best! …I ordered 6 books for our office and gave your copy that you

> gave to me to another set of parents "

>

> Breaking the Viscious Cycle mentions that some kids are very

> sensitive to even legal simple sugars early in the diet. This

was

> our Ella. One parent that counseled us said… All Eskimos eat is

> meat. And it won't be forever. …. Salt, juicy steak is

> delicious. Chicken thighs are tender and fat which is very

> flavorfull. Ella loved it but hardly ever ate meat before this

> diet. A post came along several months into our journey.

> Following stool formation and feed only digestable foods…we were

> doing a diet protocol like Dr. Natasha McBride's anti diarrheal

diet

> protocol posted by Kayla Wildman for her child a ways back. No

> fruit, honey, nuts, nut butters. until you get firmed stools with

> it. I believe she said to go two weeks with this and then try one

> food at a time. It can be searched within the files.

>

> Gertrude Snicklegrove's Bone Broth recipe in the archives is great

> for getting the matrix of minerals such as calcium, magnesium,

> glucosomine, etc. that are the easiest to digest while

dairy/yogurt

> was not tolerable to us early (maybe due to lots of mistakes with

> yogurt) in the diet this bone broth provided some of those needed

> minerals. This helped in addition to the chicken soup recipe

within

> BTVC.

>

> We are going on 17 months now on the SCDiet. Ella eats the

> following broad range of foods now… Progress does happen….Tolerance

> does improve. We are still in the process of healing. Too much

raw

> pear will still loosen her stool from the goal of toothpaste

> consistency. Her excema is gone which we struggled with for many

> months. I think it was related to dairy as well. Dripping the

> yogurt helped tremendously in terms of tolerance. Some have said

> there is still lactose (very small amounts) and galactose in the

> whey. To drip it is to rid the yogurt of even more I suspect.

> Ella was not allergic to casein but was on the RAST test to

dairy.

> The research for crohns that fits within this theory of this Diet

> points to a Mycobacterium Paratuberculosis (MAP)

> overgrowth/infection. Biofilm research suggests partners such as

> candida yeast and others joining it. MAP has been found in

Milk.

> (It lives beyond standard pasteurization) Ella drank lots and

lots

> of milk before her diagnosis. Even the smallest amount of food

from

> a milk source for this MAP may cause a reaction I suspect. That

is

> just my supposition. There is other research that I have come

across

> that suggests some kids lack the ability to digest galactose--A

> chromosome issue. Ultimately…what Ella can digest and not react

to

> is truth. Extremely dripped yogurt seemed to help us a lot. It

> could've also been our layoff from it for several months that

allowed

> additional healing. Or a combination of the two. Once highly

> reactive to any dairy she not tolerates Ghee and yogurt.

>

> One parents findings,

> Brent McKinney Father of Ella age 5 with Crohns. SCDiet 16

> months. No meds.

>

> Currently Ella's Diet looks a lot different then our first months:

> Supplements:

> Cod Liver Oil, Fish Oil

> Kirkmans L. Acidophilus

> Dripped Goat Yogurt Three strains Dairy Free starter GI pro

>

> Meats:

> Bone Broths…all types…chicken, beef, turkey bones

> Wild Alaskan Salmon

> Wild Alaskan Halibut

> Organic Hamburger, Steak

> Free range Chicken, Turkey—including the skin which she loves.

> Lamb

> Buffalo

> Eggs

>

> Cooked Veggies:

> Califlower—steamed and pureed

> Asparagus

> Green Beans—

> Spinach

> Butternut Squash

> Brussel Sprouts

> Cucumber

> Carrots

> Onion

> Garlic

>

> Ripe Fruits:

> Banana

> Papaya

> Pinneapple

> Mango

> BlueBerries

> Raspberries

> Peaches

> Organic unsweetened Cocunut flakes

>

> Nuts:

> Organic Pecan butter

> Occasional Almond flour …small use here a very advanced product

>

> Manuka Honey 10+

>

> Drink:

> Mineral Water high in content with magnesium, calcium

>

> Coconut oil

> Ghee

> Extra Virgin Olive Oil

>

Hi Brent,

What a lovely post. Gives hope to all who are struggling. I am so

pleased Ella is doing so well.

Regards

Glynis mam to Jasmine 7 yrs

Diagnosed with Kabuki Syndrome

NG tube fed