It's been a few months since we've updated this blog. Our son started on a 12-week course of nothing but EleCare. Without any additional meds, EleCare put him into remission. His CD symptoms/blood disappeared, he gained about 10-15% of his body weight back, lab values (mostly) back to normal, and stools were surprisingly solid/normal. The blood markers of inflammation went back to normal, though his liver markers were elevated. One nurse who is experienced with enteral nutrition explained that this often happens when someone gains weight rapidly.
We began adding foods gradually back into his diet. The funny thing is that all of the SCD foods that he ate previously... he won't TOUCH now! We've started in with rice, saltines, fresh baked bread from Great Harvest... and have stayed away from very fibrous foods.
Right now blackberries are ripening in our backyard and he's been begging us to try them -- so much so that it becomes an argument. Yesterday, I caved and let him try one with the stern warning that it would probably hurt his belly. Of course, this morning he was doubled over in pain and laying on the couch. While we're not 100% positive that is what did it, it's just crazy that something as simple as a blackberry could potentially cause pain.
He's had normal foods for about 6-7 weeks now (with supplements of EleCare) and has maintained remission. There are definitely foods that don't sit well with him (Cucumbers set him off big time) and we feel like he might be heading towards a relapse. We might put him back on 100% EleCare for a few weeks to get him back on track.
In other news, I'm holding his new baby brother (Miles) as I type this. Miles was born on August 4th and weighed exactly the same as Cyrus. They also look eerily similar to each other, but Miles has been far easier!
We began adding foods gradually back into his diet. The funny thing is that all of the SCD foods that he ate previously... he won't TOUCH now! We've started in with rice, saltines, fresh baked bread from Great Harvest... and have stayed away from very fibrous foods.
Right now blackberries are ripening in our backyard and he's been begging us to try them -- so much so that it becomes an argument. Yesterday, I caved and let him try one with the stern warning that it would probably hurt his belly. Of course, this morning he was doubled over in pain and laying on the couch. While we're not 100% positive that is what did it, it's just crazy that something as simple as a blackberry could potentially cause pain.
He's had normal foods for about 6-7 weeks now (with supplements of EleCare) and has maintained remission. There are definitely foods that don't sit well with him (Cucumbers set him off big time) and we feel like he might be heading towards a relapse. We might put him back on 100% EleCare for a few weeks to get him back on track.
In other news, I'm holding his new baby brother (Miles) as I type this. Miles was born on August 4th and weighed exactly the same as Cyrus. They also look eerily similar to each other, but Miles has been far easier!
Nice. Good to hear he's doing better. Sounds like he still has healing to do - what a trooper! Congrats on Miles :)
I've been following your son's updates for awhile. Very interesting. I'm wondering if maybe the SCD didn't work because you put him on too soon and maybe his system was too inflamed to use it properly.
If you look at:
http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html
You'll see that Dr. Hunter usually starts patients with an elemental liquid diet and only after a few weeks introduces foods one by one very slowly and monitors the patients' reactions. Maybe the SCD diet should only be introduced once your son is in complete remission (via a liquid diet). I think the SCD should work for your son as these foods are the easiest on the digestive track. Also in your case maybe you should fanatically stick only with the intro diet at first nothing else.
Also if you look at the Breaking the Vicious Cycle book Pg.2 Elaine says that Elemental liquid diets seem to work because they are made up of Monosaccharides (as the SCD does).
But obviously they probably work better because atleast the food is already liquid.
(Is the liquid diet you are using made up of monosaccharides?)
Anyway, great website. You are excellent parents and I am sure your son will heal very soon.
Thanks for your feedback -- we may head back to the SCD at a time in our lives when we are able to spend more time in the kitchen. Being on the SCD taught us quite a few things about looking closely at ingredients and about what classes of food we might want to avoid (e.g. dairy). When our son is eating regular foods, we continue to include a lot of SCD friendly recipes.