hi new here & have 5 year old w/CD

 I am so sorry to hear about your little one having this disease, I too, am a Mom to 2 teens that hve CD. My son was recently diagnosed (17 yo) and my daughter was diagnosed at age 10 (now 15yo). My daughter had a small bowel resection in 2009 and has been doing great since- she is on 6MP to maintain remission. My son is still symptomatic as we are still chasing lab numbers and drug levels for him to achieve remission. I know how difficult it is as a parent to watch our children suffer with this. The decision to put our children on these scary meds is the hardest to make...I spent many sleepness nights worrying about side effects, but I also want my children well; when they are in remission and can get on with their care- free childhood, it is a beautiful thing! It must also be difficult for you, having to deal with your own flare-up, while trying to care for your little one. Hang in there..this forum is wonderful, great people with lots of support and advice. I am new here, and loving it, very comforting to know there are others out there who understand and care!

The SCD diet seems to help some, but not all, patients. My daughter is 23 and using it - so far, since 2006, she has managed to avoid the more toxic meds by instead using diet, Entocort, and/or LDN. So far, she has been symptom-free with the help of the less toxic meds and diet. But she is still tinkering to find the optimal combination of meds and/or diet which will knock her CRP from 2 to less than .8 (the normal range).   

Here's more info about the SCD diet: www.breakingtheviciouscycle.info It's possible the diet can help Pentasa do a better job. You could try it for a month, to see whether anything changes. Just a word of warning - read the book, "Breaking the Vicious Cycle" and start with the introductory version of the diet for the first few days. It's hard to follow - the hardest part is learning to shop, cook, in new ways. It's not a low carb diet - it allows fruits, vegies, meats, poultry, cheese, homemade yogurt, nuts, honey, so is basically a nutritious diet. 

LDN means "low dose naltrexone." This med is still in clinical trials for Crohn's. The first trial showed some success, and the best part was no serious side effects. This is why my daughter tried it - it helped her taper off Entocort, boosted her immune system, and kept symptoms away.  Her labs, though, weren't quite in the normal range for CRP, so she is experimenting with SCD, Pentasa, and/or LDN, to find a combo that works to eliminate symptoms and result in great labs, without resorting to the more toxic meds. (the LDN/Entocort combo did this, but Entocort shouldn't be used longer than a couple of years) Dr. Leo Galland in NYC can talk to you about LDN and prescribe it, if you are interested.

The enteral diet can work, but as soon as your son goes off it, his symptoms are likely to return. So if you are seeing blood, you can try the enteral for a few days and see if it helps, or try the introductory version of the SCD diet and see if it helps. These might be the fastest options. You could also try enteral, then transition to SCD. LDN takes about a month to help most patients that respond to it, but some see results in days, and others do not fully respond until three months' time. 

njmom said...
Yes, EMom, it's good to see you! Your signature seems to say your son is on the Maker's Diet, but not on the SCD diet. Is this true?