One quick note about the Absorb Plus EN product we've been trying. Of any food/supplement we've ever given our son, I've never seen anything move from one end to the other more quickly than the chocolate Absorb Plus. Literally, within 5 minutes of drinking the shake he declares: "I have to go poopy!". It's amazing, and worth noting if constipation is ever a problem.
When we tried (vanilla) EleCare a month ago, we didn't observe this *problem*. The bad news is that EleCare is way more expensive than the Absorb Plus, and Absorb Plus ships from about an hour north of our house (~ 1 day delivery). The good news is that I've seen EleCare on Ebay at a reduced price, just in case our insurance company chooses to be a typical insurance company and deny coverage.
Tuesday, March 30, 2010
Saturday, March 27, 2010
Weaning off Entocort, on to Enteral Nutrition
That's the outcome of the GI appointment this week. We're meeting with a nutritionist on Wednesday to determine how many shakes to drink each day and how to proceed with getting insurance coverage for them (if possible). After 8+ months of the SCD, I think he can handle 8 weeks of nothing but shakes. In many ways, the EN will be much simpler: if he is hungry, I know exactly what to feed him! Actually, the EleCare tastes a lot like cake batter and our son sucks it down and says it tastes great. We bought some of the Absorb Plus (based on a commenter's suggestions) and that stuff tastes decent too (the chocolate is much better than the vanilla or berry).
Our boy jumped a growth curve, and not in the positive direction. He has tracked along the 75/50 percentile for height/weight B.C. (before Crohn's), and now seems to be closer to 40/30. It's time to try something different for a change and we hope the EN diet will boost his growth.
Here's a picture of Dr. Jekyll / Mr. Hyde in his best outfit:
Our boy jumped a growth curve, and not in the positive direction. He has tracked along the 75/50 percentile for height/weight B.C. (before Crohn's), and now seems to be closer to 40/30. It's time to try something different for a change and we hope the EN diet will boost his growth.
Here's a picture of Dr. Jekyll / Mr. Hyde in his best outfit:
He broke our hearts this week (well, not really) and *finally* declared that he had taken himself to go poop and cleaned himself up without any help. His sister, who is a little over 2 years old, has been wearing underwear to bed for the last couple of months and this seems to have made an impression on our boy... fueled a little competitiveness that we haven't seen before!
Tuesday, March 23, 2010
Back for a Follow-Up
It's time to get rid of Entocort. The only good thing that it did was make my son learn how to swallow a horse-size pill. He throws those two pills back with breakfast every morning all by himself like a champion. Beyond that, I would say that the medication has truly done nothing.
Not all is bad though: for the first time in 10 months, we did have a good solid stretch of solid several weeks ago. However, I'm (tentatively) convinced it was more due to the introduction of EleCare 1-2 times daily than it was the Entocort. Soon after we ran out of the EleCare, the stools started looking like the same old runny bloody mess. In fact, we're headed to the GI doc today to see what we can do about getting either EleCare or Absorb Plus covered by insurance and going with the enteral nutrition route for a while. I'll update soon with what I find out.
As for the SCD, it's almost a masochistic way of life now with what we feed our son and it's difficult to imagine abandoning it. The rest of our family has become less rigid about adhering to the SCD and we've stopping hiding the fact that mommy and daddy will sometimes have a bagel or bowl of cereal. Our son is mostly okay with that but certain foods really do hit his hot button if he sees them (potato chips and bagels). He's had a weird fetish lately of wanting to smell our coffee too. He tells us that he won't taste it, but he just wants to smell it. His sense of smell has sharpened dramatically over the last 6 months...
I cannot begin to express how much of a roller coast ride SCD shopping is... going to certain stores for certain things every week: Whole Foods, Trader Joe's, QFC, Safeway, The Grocery Outlet (the one we go to is now self-dubbed the "ghetto" store), and the local fruit market. Shopping at Whole Foods makes me crazy. In many ways it's a great store because I've been able to find the hard-to-find stuff there: SCD-legal sausage, hot dogs, dry curd cottage cheese, and legal sliced turkey deli-meat. But seemingly at random, Whole Foods discontinues carrying certain products that were our son's *favorite* (like the legal deli turkey):
"Sorry son, you can't have turkey anymore because the grocery store no longer wants to sell daddy a half a pound for $7"!
Not all is bad though: for the first time in 10 months, we did have a good solid stretch of solid several weeks ago. However, I'm (tentatively) convinced it was more due to the introduction of EleCare 1-2 times daily than it was the Entocort. Soon after we ran out of the EleCare, the stools started looking like the same old runny bloody mess. In fact, we're headed to the GI doc today to see what we can do about getting either EleCare or Absorb Plus covered by insurance and going with the enteral nutrition route for a while. I'll update soon with what I find out.
As for the SCD, it's almost a masochistic way of life now with what we feed our son and it's difficult to imagine abandoning it. The rest of our family has become less rigid about adhering to the SCD and we've stopping hiding the fact that mommy and daddy will sometimes have a bagel or bowl of cereal. Our son is mostly okay with that but certain foods really do hit his hot button if he sees them (potato chips and bagels). He's had a weird fetish lately of wanting to smell our coffee too. He tells us that he won't taste it, but he just wants to smell it. His sense of smell has sharpened dramatically over the last 6 months...
I cannot begin to express how much of a roller coast ride SCD shopping is... going to certain stores for certain things every week: Whole Foods, Trader Joe's, QFC, Safeway, The Grocery Outlet (the one we go to is now self-dubbed the "ghetto" store), and the local fruit market. Shopping at Whole Foods makes me crazy. In many ways it's a great store because I've been able to find the hard-to-find stuff there: SCD-legal sausage, hot dogs, dry curd cottage cheese, and legal sliced turkey deli-meat. But seemingly at random, Whole Foods discontinues carrying certain products that were our son's *favorite* (like the legal deli turkey):
"Sorry son, you can't have turkey anymore because the grocery store no longer wants to sell daddy a half a pound for $7"!
Sunday, March 7, 2010
Solid
We've had a great stretch of solid stools. Who would've thought I'd cheer for my son's pooh's? Four *solid* days, little blood, and clearly feeling good, this may be a fluke but we'll take it! Today was quite a bit more mushy, so the streak may be coming to an end however...
Our boy still had tons of energy and has been eating like crazy. It's difficult to keep up with him and we find ourselves looking for more and more ideas for creative snacks that fit within where he is on the SCD.
After 4 weeks of Entocort, we hadn't seen much improvement... though our doc said it could take about 6 weeks before seeing its full effect. We introduced the EleCare after 4 weeks of Entocort to see if we noticed any incremental changes one way or another. The EleCare is a great non-SCD snack that doesn't seem to bug his gut, and may be helping. In any case, our son likes it and I feel good that he's getting more nutrients without any adverse effects.
Our boy still had tons of energy and has been eating like crazy. It's difficult to keep up with him and we find ourselves looking for more and more ideas for creative snacks that fit within where he is on the SCD.
After 4 weeks of Entocort, we hadn't seen much improvement... though our doc said it could take about 6 weeks before seeing its full effect. We introduced the EleCare after 4 weeks of Entocort to see if we noticed any incremental changes one way or another. The EleCare is a great non-SCD snack that doesn't seem to bug his gut, and may be helping. In any case, our son likes it and I feel good that he's getting more nutrients without any adverse effects.
Wednesday, March 3, 2010
8 Months...
I've not really intended to update this blog only monthly, but sitting back and reviewing the previous month seems like a natural thing to do (rather than daily or weekly) with this diet. Last Saturday was one of the worst Crohn's Days that our boy has had. By 11am, he had been on the pot about 6 times and by the end was just pooping blood. No fun. He also prolapsed for the first time in many months. No fun at all.
All of this after 4 weeks of being on Entocort. To be fair, I think our boy got a hold of a piece of SCD-legal pork sausage that had a bit too much (unmixed) pepper in it. The previous night, he mentioned something about that piece being "spicy". The next morning was when the trouble began.
After two days of not pooping after this episode, we wondered if something was wrong. He let us know that he needed to go and... lo and behold... the first solid poop in about 10 months. While it had a little blood at the end of it, it was definitely solid. Today's was similar.
He's generally been feeling good, though he seems to have a daily mental breakdown - maybe due to the steroid? The breakdowns are pretty irrational and he doesn't really know why he's having them:
Us: "What's the matter?..."
Him: "Nothing's the matter! (crying)... I don't know"
It's probably the medicine talking. We've also been giving him EleCare, which smells and tastes like cake batter. He loves it. L O V E S it. Definitely not SCD legal, but we thought it was worth exploring as a enteral nutrition supplement due to not-so-great height/weight gain. Growth issues are starting to become apparent, as well as energy issues.
HOWEVER. I will note that our boy pays very close attention at his gymnastics lessons and preschool, unlike many of the other kids who cannot stop moving (almost twitching) long enough to listen. Part of this is his personality, but I know part of it is the diet as well.
In summary, I have been thinking of abandoning Entocort as it hasn't seemed to be working after a month. The last couple of days have caused me to pause, but I'm still cautious and skeptical about it. The next step would either be total enteral nutrition or methotrexate + SCD.
Keeping our fingers crossed for something to work...
All of this after 4 weeks of being on Entocort. To be fair, I think our boy got a hold of a piece of SCD-legal pork sausage that had a bit too much (unmixed) pepper in it. The previous night, he mentioned something about that piece being "spicy". The next morning was when the trouble began.
After two days of not pooping after this episode, we wondered if something was wrong. He let us know that he needed to go and... lo and behold... the first solid poop in about 10 months. While it had a little blood at the end of it, it was definitely solid. Today's was similar.
He's generally been feeling good, though he seems to have a daily mental breakdown - maybe due to the steroid? The breakdowns are pretty irrational and he doesn't really know why he's having them:
Us: "What's the matter?..."
Him: "Nothing's the matter! (crying)... I don't know"
It's probably the medicine talking. We've also been giving him EleCare, which smells and tastes like cake batter. He loves it. L O V E S it. Definitely not SCD legal, but we thought it was worth exploring as a enteral nutrition supplement due to not-so-great height/weight gain. Growth issues are starting to become apparent, as well as energy issues.
HOWEVER. I will note that our boy pays very close attention at his gymnastics lessons and preschool, unlike many of the other kids who cannot stop moving (almost twitching) long enough to listen. Part of this is his personality, but I know part of it is the diet as well.
In summary, I have been thinking of abandoning Entocort as it hasn't seemed to be working after a month. The last couple of days have caused me to pause, but I'm still cautious and skeptical about it. The next step would either be total enteral nutrition or methotrexate + SCD.
Keeping our fingers crossed for something to work...
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