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...
Hi Bryan,
How long was he going to be on entocort on originally? Is it like pred and only for short term use? Do you think it might be the formula working? If he likes it, maybe he wouldn't mind doing EN for a few weeks - how great would it be if that brought him into remission? I was recently sent an article written by a GI (ped) at Columbia U who uses diet and supplements to treat moderate to severe crohn's in children. I can't attach it here for some reason, but if you'd like a copy, email me at schopra3@gmail.com . It's got the dosing of supplements etc, or he might be someone you might want to contact. Good luck!
The duration of Entocort is a great question - I actually don't know the answer. "Until we go broke or it doesn't work" might be the most accurate response. It's not clear that the GI doc has prescribed Entocort to a 4 year-old before.
I definitely think the EN-formula could do the trick. Now that he's tried it out, I think it would be possible to do a 3-6 week stint of EN.
Through my employer, I have access to most science/clinical journal articles - though we sincerely appreciate your offer! So I can refer to the correct one, was the article you cited by Slonim et al at Columbia U?
Yup. I've been in touch with Dr. Slonim - he's had crohn's since he was a teen and said he's had 2/3 of his digestive tract removed. This inspired him to find a nutritional/supplemental regime for the treatment of pediatric IBD. He seems very willing to help and we are hoping to consult with him. Good luck whichever route you choose.