has anyone experienced this??????

[Guest guest]

Hi all,

My friend's son is very sick with E.E., E.G. a feeding tube with EO28,

colitis, blood in stool, severe abdominal pain at night and he has

lost 12 pounds. Doc keep wanting to give him med's and he is sick. I

told her about the scd diet, but has anyone every experienced this

before? Can you do the SCD diet with a feeding tube????

Thanks for all your help.

Debbie

[Guest guest]

---Hi Debbie,

I have mailed you off list about feeding tubes and SCD. My daughter is

fed by tube and we are doing SCD down her tube, with better behaviour

as a result. She does not have a diagnosed bowel condition, but has

poor gut motility and suffers bad constipation. She is tube fed as she

had fat malabsorption and now will not eat a great variety of foods.

HTH.

Regards

Glynis mam to Jasmine nearly 8

Diagnosed with Kabuki Syndrome

NG tube fed

In pecanbread , " debbierashid " wrote:

>

> Hi all,

>

> My friend's son is very sick with E.E., E.G. a feeding tube with

EO28,

> colitis, blood in stool, severe abdominal pain at night and he has

> lost 12 pounds. Doc keep wanting to give him med's and he is sick. I

> told her about the scd diet, but has anyone every experienced this

> before? Can you do the SCD diet with a feeding tube????

> Thanks for all your help.

>

> Debbie

>

[Guest guest]

Debbie,

I don't have direct experience with such a sick kid, but my daughter has EC,

and I was told when she was about 1 1/2 to take her off all food and put her on

eo-28 and the like. I refused. When I dug deeper adn looked harder, I found

that my daughter had lead poisoning ( long story) and I can trace the issues

back to the heavy metals. We have been SCD since 7/06, and it has done

wonders for my daughter, along with DAN proticol, even though she is not

Autistic. I would be glad to share my expereince with your friend. The EE and

EC communities were no help to me. I have heard of people starting from where

your friends son is, it is a long road, with many ups and downs, but I have

heard of some successes. I do know that if done properly, you can puree and

give real food through a feeding tube.

My prayers will be with this Mom and her son.

Ellen

Mom to Emma

lead poisoning, eosinophilic colitis

SCD since 7/06

we are going to beat this one!