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.
Wednesday, October 3, 2012
Thursday, May 3, 2012
Acid Reflux
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.
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.
Sunday, March 25, 2012
Foods
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!
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!
EleCare / Enteral Nutrition Update
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.
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.
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