Mothers of Children with Crohns Community Group
This group is for Moms who have kids with Crohn's disease. Hopefully we can help support each other.
Hi....So, my husband (a scientist at UC Riverside in California) happened to run into one of the two researchers at the university who studies Crohns. Well, needless to say, they had a long talk...... Apparently, there is another approach that we may not have heard of. It involves the idea of ingesting parasitic worms (helminth), and the presence of them in the gut apparently stimulates the good kind of T cells that polices inflammatory responses in the body....from allergies, MS...and IBS. I just began reading the papers tonight, and it sounds fascinating and simple, and maybe a real approach to fight this disease. The studies seem to be extremely promising and clinical trials are going on right now.
Here's the latest paper, published in July of 2012...it is called,"Soluble lelminth products suppress clinical signs in murine experimental autoimmune encephalomyelitis and differentially modulate human dentritic cell activation. " The journal is Molecular Immunology It's 51 (2012)210-218. I would be happy to copy some of these papers if you can't find it and send them to you. There's another one called "Trichuris suis therapy in Crohns disease" It's from 2004, and the main author is J V Weinstock. He's the main guy, and I think if you googled him, you would find lots of links to his research. I believe I saw somewhere that they are advocating clinical trials in children......
Our GI's are saints for doing what they do, but there is so much different research out there, I don't think they have the time to see EVERYTHING.
Please let me know what you think, and if you can't find the info, I can send it to you.
Kate
Here's the latest paper, published in July of 2012...it is called,"Soluble lelminth products suppress clinical signs in murine experimental autoimmune encephalomyelitis and differentially modulate human dentritic cell activation. " The journal is Molecular Immunology It's 51 (2012)210-218. I would be happy to copy some of these papers if you can't find it and send them to you. There's another one called "Trichuris suis therapy in Crohns disease" It's from 2004, and the main author is J V Weinstock. He's the main guy, and I think if you googled him, you would find lots of links to his research. I believe I saw somewhere that they are advocating clinical trials in children......
Our GI's are saints for doing what they do, but there is so much different research out there, I don't think they have the time to see EVERYTHING.
Please let me know what you think, and if you can't find the info, I can send it to you.
Kate
I love the way you and your husband tap into all available resources! My version is my mother. She spends quite a bit of time watching "The Doctors" and "The Dr. Oz" shows. Whenever she sees ANYTHING (remotely) gut related, she passes the information along to me. Dr. Oz had a guest on about a year ago talking about the parasitic worms. It is an interesting theory. The worm larva are found on fresh produce all over the region, and, apparently, the incidence of Crohn's in the region is very low. I mentioned it to our GI doc. He was aware of the study, but did not feel that we were "there" yet and he said he'd like to see more research data. My son, on the other hand, had a very clear response..."there's no way you are going to make me swallow worms!!!" If it comes to that, I guess we will have to knock him out first! LOL
Keep the great info coming! You are a jewel!
Cheryl
Take care!
Gus has already had a few surgeries. He currently has two insanely tight strictures. One at the duodenum and one at the terminal ilium. We've been trying "medical" solutions since August, but I don't think we will be able to avoid surgery for much longer.
Our GI keeps up the the trends in research, but is not super excited about being "one of the first" to try anything. We were looking at Tysabri, but it made him very nervous. I think he was relieved with my son's blood tests came back with antibodies that excluded him from trying Tysabri. A leading Pediatric GI suggested Stelara for Gus. When our doc looked into it, there just isn't enough data on dosing for adults and no data for use with children, so that is out too.
We are trying Tacrolimus (Prograf) for now. It is an anti-rejection drug for liver transplant patients. The hope it that it will calm the inflammation down long enough so that the gut tissue can heal itself. Time will tell how effective this will be. We do know that it will NOT prevent new strictures from forming...but, then neither did Remicade or Humira (and that is what they are supposed to be good at doing!).
Defiantly keep me posted as you acquire more information. Maybe we can administer it to Gus through his G-tube! He won't even have to know...hee, hee, hee. Here's a good question. If the parasites are not effective for a patient...can they be removed?
Hope you have a wonderful Thanksgiving!
Cheryl
I'm sorry to hear that your son has already had surgeries, and perhaps another one coming up. We haven't dealt with strictures yet (I think), at least the doc has never mentioned them. My son had several fistulas at the time of his last colonoscopy a year ago---and we are only a year and a half in on this disease. At any rate, we can only hope that researchers will find many treatments that work and are SAFE. What I've read so far is that the "worm-parasite" treatment studies have shown that it is safe for humans, and I believe my husband read that they have a short life-cycle in the gut. After a month or so, a person would drink "the stuff" again. I don't know.....it just seems better than messing with our internal immune system, with leukemia always lurking in the outer edges of our dread. It's worth a look.
Oh....my son called me Wednesday at 4:30---just as I was getting the house ready for Thanksgiving guests with, "Mom, you need to pick me up from the skatepark. I really messed up my ankle and it's swollen." Sigh....immediately went to urgent care, took x rays and he has a broken ankle (the growth plate), and is in a cast for 6 weeks! There's always something!!!
Question, how does your son's Crohn's usually present? Gus' Crohn's usually ends with strictures. He does have the inflammation and the ulcerations, but mostly it's the strictures that are the biggest problem. Gus' disease seems to be mainly in his intestines.
How is your son healing from the broken ankle??
Hope you had a nice Thanksgiving.
Cheryl
I'm glad you passed the study info to your GI...I plan to do the same the next time we see ours. Since someone is researching this approach in my backyard, I'm definitely going to follow this one---I still need to read all the papers. I do know that there are clinical trials going on around right now...
As for my son's type of Crohns....I don't think he has the stricturing type, at least I never heard the doctor talk about that. According to the colonoscopies, he had moderate to severe inflammation throughout most of his large, and some of his small intestine. Of course, the Ilium was a mess, and there were fistulas here and there. I have no idea what he would look like inside at this moment, but probably would see mild to moderate inflammation. He currently isn't in any pain, but of course his 100% is not our 100%. As long as he sticks with his gut-happy foods, all seems ok right now. His next remicade date is January 3rd, so he will start feeling the "dragon" waking up about a week before that.
As for his ankle, sigh, I am sure he is healing just fine in his cast, but I know he will be right back on his skateboard again. He says skating increases his endorphins!
Is that new med. working for your son?
Google Jean-Pierre Kinet boston mass helminth therapy hygiene hypothesis
The article, published July 2012 is called Trichuris suis ova: Testing a helminth-based therapy as an extension of the hygiene hypothesis. It's from the Journal of Allergy and Clinical Immunology, Volume 130, issue 1 pages 3-10.
The article is pretty easy to understand and underscores the several studies that shows this appears to be a SAFE treatment, and there are many more clinical trials underway---all which appear to show very promising results.
Some of our GI's don't read all the research that is out there......
We saw our GI doc today. Passed along the information. He was already aware of the studies. Then he mentioned another one (that I had already heard about from someone else)...fecal transplant. The idea is that good bacteria from "donor" (usually a family member) fecal matter will help eliminate bad bacteria and restore good bacteria in the patient. I know this idea is being used in a variety of ways. "Good" side ear wax to the "bad" side. Nasal. Etc... It's actually not unlike a bone marrow transplant where the hope is that the donor marrow will help the patient restore normal marrow function themselves. Will keep you posted if I learn more about that.