As our son's grandfather was just recently diagnosed with Crohn's Disease, I am now revisiting some of the posts from prior years. The SCD path we took makes me so sad in light of what we've experienced with EleCare since then. Having a young child with Crohn's Disease and trying to figure out what to do is such an emotional journey. If I can offer advice to anyone out there undergoing a similar experience: try enteral nutrition first before anything else. It might work for your child, it might not... but you'll likely not regret the attempt. No matter which path you choose to go down, get the inflammation under control as quickly as possible.

I am now down to updating this web site about once a year because there is little Crohn's-related news from my son to update on. What we've learned is that stress activates his Crohn's disease, almost exclusively at the beginning of each school-year due to his anxiety. A week of EleCare effectively gets him back to normal. We did that in September 2014 and he has been good ever since. We are hoping to visit his GI doctor for the first time in a few years once we get the appropriate insurance referrals set up (it's been a while!). The appointment is mainly to satisfy insurance coverage requirements for EleCare... 

All is well otherwise for our boy who recently turned 9: half-way to adulthood!
About two weeks ago, I noticed our son's attitude souring a bit. He tended to get irritated by anything and everything. I then asked him to do a stool check and could tell things may be starting to go awry with his stomach. (no blood, just runny) We're not sure what set him off, but he certainly seemed to be off. When he started preferring his Elecare over the food on his plate, we knew that it was time to go 100% EN for a few days.

It's been about 6 months since he's had a flare up like this, and it took about 3-4 days of 100% EN to get things back in check. Since then, we've begun reintroducing foods he would normally eat one meal at a time - using a guide of adding foods at about 50% of his caloric intake on the first day and then 80-90% on the next days. We continue to supplement with about 16 ounces of Elecare per day for growth reasons as well as maintaining our son's exposure to and taste for Elecare.
It's been a year and a half since our last GI appointment and, for a couple of reasons, we decided it would be a good idea to go get a checkup. First, we wanted to check our son's lab work and growth curve. Second, we want to stay in the good graces of our insurance company who continues to pick up 80% of the EleCare tab.

Based on labs and growth, you wouldn't know that our son has a diagnosis of CD. All key labs (ESR, CRP, hematocrit,...) were in the normal range. Pre-Crohn's, our son tracked along the 50-60% growth curve line for both height and weight. A year into Crohn's, he dropped down to about 20% on both measures. Since starting EleCare about 3 years ago (3 years without any other meds), he's been tracking consistently on the 50-60% curve.

The GI doc treats our appointment as an educational session (for him). He asks about out of pocket costs, costs to the insurance company, utilization patterns, what we do when a flare comes up, and how well he tolerates it. Based in part on our success with EN, I get the impression that he is attempting to offer this therapy to more of his patients. He indicated a low rate of success of getting older / stubborn kids to try it or stay on it. I can imagine how this would be a difficult sell for a teenager. I hope that when our son is a teenager he will consider it over meds (and that it continues to work well). My sense is that EN is likely to be most successful with the younger kids while they are still malleable. It's also an easy sell to parents who don't want to put their kids on hard drugs.

As for day to day life with CD over the last 6 months, things have been surprisingly quiet. In the first year or two on EleCare, he averaged a flare-up every 2-3 months and we would have to put him on EleCare full time for a week to clear it up. In the last year, I can only recall 2 times where we put him on full time EN for 4-5 days. Otherwise, our 7 year-old now makes his own EleCare... independence is awesome! We marked a 12.5-ounce waterline on the container, 10 scoops of EleCare, close the container and shake. This makes about 15-16 ounces of liquid and is about how much he consumes daily.

First grade with EleCare is fairly straightforward. We've had a few instances where, for reasons unknown - but probably his fault, the drinking container we send him "fails" at some point after lunch. It then leaks into his back pack and on the bus ride home the whole bus smells like vanilla wafer cookies. He gets a little embarrassed when this happens and half the bus is shouting "what smells like cookies?", but otherwise school is pretty simple with EN. The nurse has a can of EleCare in the office in case he ever needs some, but so far that hasn't been necessary.
We're now one-month into first grade and things are great Crohn's-wise. Birthday parties are kind of brutal, as cake frosting seems to send our son into a flare-up. A few days of EleCare fixes him right up and he's back on track GI, growth, and emotionally. We had a 3-4 day stint of sole enteral nutrition last week. It was a tiny battle, but he gets it and it helps him. His teacher(s) admire his ability to cope with the treatment and be an advocate for himself. This year, he has a little girl in his class with a severe peanut allergy. This has really helped him understand that other people have issues too (not just him). Sometimes, you just have to deal with what life throws at you!

We have not been back to the GI doc in a year. We will probably go for a visit in the next month or two just to keep the EleCare covered by prescription -- but I totally expect my son's lab work to be awesome, given how he is presenting.
One of the things we're battling over the last few days (and since CD diagnosis) is acid reflux. The last two dinners we had pork chops marinated in Italian dressing and some cantaloupe on the side. One of these two culprits has been causing our son to make the "tennis ball in the throat" swallowing noise. Acid reflux is one of those things that we might be able to prevent just by eating the rights foods... but I know how uncomfortable it can be and I feel bad for the little guy when he gets it. Since acid reflux appear to be a high risk factor of esophageal cancer, I want to minimize these episodes as much as possible!

Back when the docs at the Children's Hospital put our son on prednisone, they also prescribed him an acid reflux medication. Since we were mostly focused on getting his gut well, I don't recall if the acid reflux medication worked well... but maybe it would be something to consider in the future if acid reflux continues to be an issue.
I also wanted to say that we've re-introduced an old SCD favorite back into our son's diet: homemade yogurt... which is so good that both of our other non-CD kids prefer it to store-bought as well! Our son loves it -- I have a batch going right now.

Otherwise, our son will (can) eat most any other type of food. We tend to stay away from anything tomato-based (acid reflux), apples (diarrhea), milk, and anything really sweet or chocolatey. Fruits and vegetables seem to be our biggest problem area... which may be true for many other little kids as well. He does very well with meat, bread, and cheese. Favorite dessert might be a non-dairy raspberry sorbet made by a local ice cream shop!
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Our first post in 2012! I'm happy to report that our lack of posting is due to a lack of Crohn's related issues to report. Crohn's disease has not been the major health impediment to my son that I know it could be. That's not to suggest that he's not impacted by Crohn's on a day-to-day basis... just that things are very under control.

Since starting kindergarten in September, he has had three week-long stints of nothing but EleCare in order to get him feeling good and back to normal. He's averaging about 8-10 weeks between an exclusive EleCare diet, where "exclusive" implies that he drinks EleCare as his sole source of food (with the exception of gummy bears, lightly flavored carbonated water, and an occasional Pediasure for flavor variety). The nutritionist said he could have gummy bears! During those 8-10 off-weeks, he continues to supplement daily with EleCare. We find (like yesterday) that when our son doesn't get some daily EleCare (extra calories) - he becomes quite a monster... which is no surprise.

I think our son has become pickier with food recently, and more often will reach for the EleCare over what is put in front of him at the dinner table. This creates a bit of a dilemma for us as parents, because on the one hand he is embracing his "medicine" -- and on the other, he is rejecting the meal that we put hard work into! We are fairly confident that he is being "picky", rather than consciously or subconsciously thinking that a food will hurt his tummy.

Height-wise, I'd say he is due for a growth spurt soon... though he was right on track with a normal growth curve 6 months ago. Weight-wise, the kid is just a solid little beef-cake... not a trace of fat on his little 6 year-old body, but just solid and dense as a rock.

Emotionally and socially, he is clearly still lagging and I think Crohn's is partly to blame for this. The year we spent trying to figure out how to treat Crohn's, between meds and the SCD, really put him behind in many facets of life. While he has mostly caught up physically and academically, he is not quite there yet emotionally and socially. However, there is some reason to believe that this is not entirely due to Crohn's either... :)

Thanks for reading... if you have questions, please post comments and we'll respond asap.