Our son started kindergarten a few months ago and is eating it up. Well, recently, he's been drinking it up as he just finished a week-long round of nothing but EleCare. When he had his first round of EleCare in kindergarten in October, it had been about 3 months since he'd had to do a full week. We were a little nervous for him for a variety of our own reasons. He gave us an additional thing to worry about by all-of-a-sudden becoming self-conscious about what the other kids might say about his "smoothie drink"! It didn't take him long to get over that...

Crohn's symptoms have been minimal. We had a GI appointment in September and everything was perfectly normal. No meds, just a little EleCare every day and a full-time week-long round every 6-8 weeks. With the success he has had, our health insurance company agreed to cover 80% of the costs. This has been such a blessing for us!

Thanks for reading...

My wife and I caught this story about six months ago... a story about a local kid who has tried EN for CD:

News Link

Wow - time flies when you have three kids age 5 and under... my last update was in December! I'll keep updating when there are CD events going on or when anyone has questions (thanks Savannah's mom!).

Cyrus is still using EleCare as treatment for Crohns. I asked Cyrus what he likes most and least about EleCare and he said he likes the *taste* most, but he doesn't like it when he has to *only* use EleCare. He says the first day back on 100% EleCare makes him feel "sad". But usually by day 2 or 3, he's happy as a clam and bouncing around with lots of energy. (after a big glass of EleCare, he gets what we call an "EleCare high")

For those considering putting their child on EleCare for Crohns (or perhaps UC), our dietician initially put him on a 12-week course of 100% EleCare (which probably could have been shortened to 8-10 weeks). After that, a typical 5-8 week cycle goes like the following:

Days 1-14: 100% EleCare (we've added flavored club soda as a "treat", or occasionally we'll give him Pediasure popsicles). We generally wait to reintroduce foods until we get a few bloodless solid poops in a row. This last round, Cyrus told *us* that he was ready for food. It usually takes 7 to 10 days to clear up back to normal.

After that, we add food back in - more or less all at once. We don't give him dairy, nuts, anything with high sugar content (except for gummy bears), or foods that might be scratchy on the gut. We are unsure about red pasta sauces, and we still tend to give him cooked / skinned fruits and vegetables. We also continue to supplement him with EleCare or Pediasure, which probably accounts for about 15-25% of his calories when he's on the food cycle. We then wait and watch for signs of gut inflammation. For Cyrus, it usually happens in the following order: mood changes from happy to crabby, skin rash, and then finally messy/noisy stools that eventually will include blood unless we intervene with EleCare.

One lesson we learned from the SCD was that less is more with respect to ingredients and we tend to stay away from products that have a lot of ingredients. We buy bread for Cyrus at the Great Harvest Bread Company and happily pay $5 for a loaf of bread that only has 5 ingredients. We also still make a lot of food to ensure that we know what he's getting. Basically, the goal is to extend his periods between 100% EleCare as long as possible.

Physically, our 5 year-old is blossoming. By the end of the SCD, he had fallen from a 60-70 percentile height/weight curve to 15-20% over the course of a year. This is not a knock against SCD, just an observation of our son's experience with it. He had a *regular* doctor's appointment in January and was back at 50% height and 70% weight after 7-8 months of EleCare. We have not been to the GI doc in 5 months, mostly because things with him are going well and because we are working through some changes in insurance plans.

What I find kind of funny is that we've FINALLY come to the day where we're no longer wiping his butt. It reminded me that he's going to have to manage all of this some day for himself -- he'll eventually have to be his *own* poop inspector!!! It's a job I'll glad pass on to him. :)

We have been in a pattern since the summer: 1-2 weeks of 100% EleCare followed by 4-6 weeks of regular food supplemented with EleCare. The first signs that we need to jump back on EleCare are a skin rash (like eczema) and then irritability and, finally, loose stools. Our boy is mostly happy, but when his bowels are inflamed - he becomes a little pistol. It's our cue to put him back on the EN for a week or more.

It works like a charm for him. The other night, he had lasagna for the first time in... oh.. two years. He gobbled it up and didn't have any issues.

We have some new friends who have begun the SCD recently for their autistic 4 year-old boy to try and clear up GI issues. They (seemingly) handle the day-to-day grind of the SCD better than we did, though have seen only a little GI progress to date (after a month or two). I haven't read up much on the thoughts of the effects of SCD on autism, but it seems that looking at both GI changes and personality changes would be warranted after introducing the SCD. We'll continue to support these friends in their SCD adventure -- hopefully it helps their son in a measurable way.

Finally, we had a scare a couple of weeks ago with blood (maybe) in our daughter's stool. This would be the same exact time/age when our son was diagnosed. Since then, she's been doing fine and I hope she doesn't inherit Crohn's. It's Cyrus' disease! Not her's...

We surpassed the 6-month mark since abandoning 100% SCD and Entocort, and entered the enteral nutrition world. I am amazed at so many aspects of EN: how well it works, how surprised our son's GI doc is with its success, how much it costs, how insurance companies don't cover it, and how we don't hear of many other Crohnies who have tried it. The decision, I suppose, was all ours -- we didn't get much support from the medical profession other than through the Oppenheimer book and an awesome dietician at the children's hospital... who also noted how infrequently this treatment is prescribed and adhered to.

I've posted previously that clinical remission was obtained in just a matter of weeks (maybe 6), though we did a full 12-week course. After that, we introduced foods gradually and noted what has not gone over well. Dairy seems to be a no-go any more (which is concerning if we were to return to the SCD). Bread (homemade or Great Harvest) and sauceless pasta seem to go over fine. Saltines, no problem. Fibrous foods have been fairly limited. There are these great tasting dairy-free blintzes from Trader Joe's that he devours for breakfast.

Every 4-6 weeks we seem to introduce something that causes a very minor flare up. A mood-change is the first sign that things are about to go south, and almost always precedes GI changes. We then go back on 100% EleCare and within a few days he's solid and good to go. The dietician advised us that we would likely need to rotate every month or so between food and EN... and this seems to be true so far: we've been rotating one month with food (supplemented with EleCare or Pediasure) followed by a week with 100% EleCare.

Our son had a follow-up appointment at the children's hospital a week and a half ago and all blood work was normal. Sed rate, CRP, liver function, complete blood count: all normal. What's more is that he jumped back up on to his pre-Crohn's growth curve and is again advancing physically, mentally, and emotionally.

The negatives for a (now) 5 year-old:
- We have to take him to the bathroom several times in the first few hours after he goes to bed or he'll wake up in a pool of pee (even through a pull-up). Eventually, this may embarrass him.

- Cost. I have no idea what the real cost is yet if we were to buy it at cost from the company. Probably $1000 / month if we were doing 100% EleCare. Our financial aid runs out this month, so I'll probably find out soon! I have been able to purchase it off of Ebay for $16 per can, which lasts a little longer than a day if that is the sole source of food.

- The first day getting back onto EleCare is a little tough... but after that, he asks for it. Seriously. He knows it makes him feel good. He shows better restraint than any adult I've ever met... he has developed an acute sense of what feels good and what doesn't.

We may go back to the SCD when we have a little more time for the kitchen... three little kids have us running ragged lately, and planning to eat SCD takes more bandwidth than we have right now. Meanwhile, I might modify the site's heading in order to not falsely advertise that we are SCD compliant!

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!

The Positives:
Cyrus is averaging a pound a week right now on EleCare. 3.5 pounds in 3.5 weeks. The past couple of days have yielded little or no blood and... solid-ish bunny turd-like stools. Amazing. On top of this, he feels great and looks great too.

The Negatives:
Other foods are starting to become an issue. Particularly, cheese. He wants some and we're not giving it to him. He also requests to *smell* each and every food that we eat. This is kind of cute in some ways, but our son has a little obsessive-compulsiveness about him and this is starting to get annoying.

The Bottom-line:
Enteral nutrition is pretty fantastic. Looking at it externally from a parent's point-of-view, I would do it full time if I were a person with Crohn's and could afford it.