mother of kid(s) with Crohn's

I'm glad I found this forum! Our family goes back a long way in search for diagnosis/cure for stomach ailments. I hope I will find some useful info here to help my kids! A number of my childre are on medication for IBD, but our GI isn't even positive they have it. We initially saw the GI for my now yr old daughter who was 5 at the time. She had been FTT from a few weeks old and always complained about her stomach. Over the years, she has had at least 7 endoscopies/sigmoid/colonoscopies wth varying results, but always much too many eosinophils and on two occassions some cryptitis. Her genetic testing for Crohns was negative and her SED rate was fine. She has been on elimination diets - with the assumption that her issues were caused by food allergies, Pentasa, Prevacid, Flagyl, Apriso, Pediasure only, Elecare only, Neocate only via ng tube. She had scopes between most of our trials of either drug or diet, none of which showed a resolution to her issues. She felt much much better when she was on the ng with Neocate for 9 months (she was 9yrs old at the time) and recently when on Apriso eating many foods (but not corn rice, nuts). Over the years, the GI has scoped some of my other children, all with lots of eos, but with two of them having high SED rates. The 2 (15 yrs and 17yrs old) with the high SED rates and crptitis have beenon Colazol, Lialda and now are on Apriso. Their SED rates have not really improved and neither have their colonoscopies (they never had one after the Apriso which they are currently on, but will be having scopes soon). This past year, my eldest daughter who never had any stomach issues, began to feel really weak. We took her to the doctor who did bloodwork and found that her SED rate was in the 80's. The doctor waited around a month, and when her SED rate was in her 70's, reffered us to our ped GI. The GI did a barium xray and said that it looed like she had ileitis. He did a colonoscopy (her SED was now 99) and could not get into the ilium. He put her on Prednisone and sent us to an adult GI who did a colonoscopy and diagnosed her with Crohns disease. At first, she was put on Pentasa and slowly tapered off prednisone. She seemed to be doing okay, and her SED rate began going down, but for so me reason the GI was not so hopeful that the Pentasa alone would do the trick. She began having symptoms again and SED rate rose so they added Entecort and she stabilized. She then had an elevation in Sed rate and they increased Pentasa. Two weeks ago, she started having stomach aches again. We did bloodwork and foung her SED rate back in the 70's. The doctor has now put her back on Prednisone for a week and switched her to 6mp.
I have a bunch of questions, but to start:
Should I worry about the side effects of 6mp?
What do you say about the SCD diet and is there any hope of getting off medicine?
What do you say about Dr. Sarno's method of eliminating this type of medical condition?
Do we sound like we are heading in the right direction with our medical care?
Thanks a lot! and thanks for reading this really lengthy post!

Hi 66mp -

While healingwell is a terrific forum for Crohn's I haven't seen many parents of children.

May I recommend the non-healingwell board I am on most of the time? Dragonpack is exclusively for for parents of children (of any age) with IBD. You and all your questions will be welcomed on DP!

http://www.dragonpack.com/ibdsupport/parents/

If you have trouble getting registered, please send me an e-mail via my healingwell id. MiSFit, the woman who operates DP, has a son fight cancer right now and there may be a small delay. I can either post your questions to DP on your behalf or do my best to answer them myself.

Welcome - sorry you needed us, glad you did.

I can only speak about the SCD.  I started SCD right at my diagnosis, and within a month felt relief from almost all my symptoms (gas and bloating, mainly).  My blood work continues to come back with lowered levels of CRP and SED.  I believe that the right diet can help with Crohn's.  There are a few to choose from, and not every diet helps every person.  I know that my 7 year old girl, who often complains about her stomach hurting, doesn't complain when I feed her a meal of just SCD compliant dishes.  It's usually when she has a high-processed bread that she complains.  I am going on 11 months on the diet, and have stuck with it hard-core.  I believe that there is validity to this diet, but only time will tell for me.  I think it wouldn't hurt to try it, and see what happens! 

66mp, I never went on the drugs.  I chose from the start to try this the natural way first.  So far, so good.  I should have a colonoscopy in another couple of months, and then we'll see how things have done this past 10 months.  I can't remember which was which, but one of the levels, SED/CRP, was at 28 and the other was around 20.  One has come down to 3, the other to less than 1.  I lost 56 pounds on the SCD, but that is good because I had that to lose!  The weight loss has slowed, and now I am at a healthy rate.  I can't seem to gain weight, but I still don't eat a lot of "fat" foods, so that might make a difference.  Yes, I do find the diet very restrictive.  I found myself recently getting bored with the food I was eating, and so challenged myself to make a couple of new dishes each week.  That's worked out well, and I'm slowly adding new things.  My taste buds have changed, so something sweet like almond-flour "cinnamon rolls" taste sweet to me, where they just won't replace "real" cinnamon rolls for people not on SCD.  If you go SCD, you have to go hard-core.  I feel that if I would have just "started slow" I would have failed.  I do believe in the diet, but I also know that every person is going to be different and that you just need to decide which route you want to go, and follow that as best as you can.  It's hard, but I'm so glad I did it this way.  Yes, I have nagging thoughts every now and then, wondering if I did the right thing.  But people quantify "remission" as a clinical (bloodwork, scopes) and physical (your personal symptoms) decrease in symptoms.  Besides the scopes, I have that, by doing what my Naturopath said to do and by following the SCD with "fanatical adherance."  I feel great, and am able to live my life, always being careful of what I eat and how much stress I carry, but otherwise, doing all the same things.

Hope some of that helps!