This group is a great idea. My daughter is 13.
Our story: We were fortunate to get the definite Crohn's diagnosis only about a month after she got sick last fall -- she was totally healthy before that. Pediatrician kept saying it was probably a virus causing the fever and weight loss, but we insisted on blood work, which showed anemia and a lot of other abnormalities. Pediatrician said "I don't know, maybe you should see a rheumatologist?" My husband's brother is a doc and said he thought a pediatric GI would be a better choice. In our area it is very difficult to get an early appointment with either. I made appointments with both types of doc and asked to be on a waiting list for both, and the pediatric GI had an unexpected cancellation a week later.
Had the colonoscopy and endoscopy and biopsies and MRE, all said definitely Crohn's. Doctor gave her Pentasa and Prednisone, neither helped much, and the doctor started pushing 6MP.
We did a ton of research. My husband is a health care researcher by profession, and I know a lot of people, so between us we came across a lot of alternatives. Early on, someone told me about the Specific Carbohydrate Diet, and we got the book, but it sounded so goofy, we didn't take it seriously.
We tried a lot of dietary supplements such as turmeric, tart cherry juice, probiotics, cat's claw, wormwood, and some others. Also supplemented with B vitamins, zinc, Vitamin D3, and lactoferrin, because of her anemia and malabsorption.
None of these things seemed to help. The only thing that did was EEN which came about because she wasn't eating and we essentially bullied her into drinking Ensure shakes all day for a few days, which was followed by the all-liquid cleanout for the colonoscopy. Amazingly she felt great for about a week after that! When we told our doctor about that, she said "Oh yes, EEN can work well, but it's too difficult to stay on it." We were furious that she had known about it all along and had never bothered to mention it as a possibility! On the other hand, she was right in a way - when we brought it up as something we should try again, our daughter flatly refused.
So we're four months into this nightmare, and we went so far as to fill the 6MP prescription, but couldn't quite bring ourselves to start administering a chemotherapy drug to our daughter without trying one last thing. With no great expectation, but considerable desperation, we started the whole family on the Specific Carbohydrate Diet.
Our daughter had had a fever every day for four months, except for the week after the EEN. Sometimes as high as 103. She had stomach aches and fatigue every day. Weight loss. Facial flushing. No appetite even though she was on 40 mg of Prednisone.
Four days after starting the diet -- no fever. No stomach ache. Both completely gone. Tons of energy and appetite. It was like a miracle. After two weeks, all the inflammatory markers in her bloodwork were back to normal. In fact, low normal. After another month, virtually everything in her bloodwork was completely normal.
She's now been on SCD for two months. We tapered her off the Prednisone and other supplements, and now all she's taking is the Pentasa and zinc and Vitamin D3. (Not sure if the Pentasa is doing anything at all, but we will reassess when it comes time to renew the prescription.)
We just came back from a week in England over Spring Break, and she was perfectly fine the whole time. Eating was a bit difficult, but thanks to good restaurant advice from some Paleo blogs, we worked it out OK.
SCD doesn't work this well for everybody, but it does seem to help a lot of people. We have become SCD evangelists, spreading the word that this is something that is worth a try. At the very least, doctors should give the information to their newly-diagnosed patients, even while they are waiting for the first appointment or the endoscopy or for other meds to start working.
We know there will be some bumps in the road, that's the nature of this disease. Still, for now she's doing well, and we are continuing to educate ourselves.
