Our boy will spend the next 8-10 weeks off of the SCD and instead will be drinking vanilla EleCare. It's a big change, for sure, but one that will hopefully get the inflammation under control -- something SCD alone, or SCD with Entocort, has not been able to do.
I think we'll start the day after Easter (not that he'll be eating chocolate easter bunnies that day). The nutritionist was able to give us two cans of EleCare to get started with... which will last approximately 2.5 days! After researching my insurance plan benefits, she notified me that we needed to figure out another way of paying for it. At roughly $60 per can, and needing about 25 cans per month, she handed me a financial assistance form that the Children's Hospital will consider on a case by case basis. They may help with 100% of the cost, 50% of the cost, or none of it... we'll find out in a couple of weeks. Meanwhile, we need to start bidding on Ebay.
One way or another, we'll figure out a way to pay for it. The question will then become: what do we feed our boy after (if?) he goes into remission. Do we go back to SCD, or try something more normal and balanced? I do think the SCD can be balanced if you are able to include the whole list of legal foods, but we were just never able to get past stage 2. This will be a big dilemma for us... we would like to see if the diet works to maintain a state of remission (once in remission).
I think we'll start the day after Easter (not that he'll be eating chocolate easter bunnies that day). The nutritionist was able to give us two cans of EleCare to get started with... which will last approximately 2.5 days! After researching my insurance plan benefits, she notified me that we needed to figure out another way of paying for it. At roughly $60 per can, and needing about 25 cans per month, she handed me a financial assistance form that the Children's Hospital will consider on a case by case basis. They may help with 100% of the cost, 50% of the cost, or none of it... we'll find out in a couple of weeks. Meanwhile, we need to start bidding on Ebay.
One way or another, we'll figure out a way to pay for it. The question will then become: what do we feed our boy after (if?) he goes into remission. Do we go back to SCD, or try something more normal and balanced? I do think the SCD can be balanced if you are able to include the whole list of legal foods, but we were just never able to get past stage 2. This will be a big dilemma for us... we would like to see if the diet works to maintain a state of remission (once in remission).
Although I have tried SCD for almost 9 months being very strict, I recently included some illegal foods with no issue. My new rule is if I can tolerate it, it's going to be legal for me. Since doing this I have found that I was even able to move on to fresh fruit and veggies. Don't ask me how because it just sort of happened. But sometimes you just have to eat what you can tolerate and not be so worried about sticking to the rules of one diet. Good luck you all are in my prayers :)
Good luck to you! We'll be watching your trials as well.
Oh wow. That is a huge jump, considering EleCare is 55.9% corn syrup. My Mom always called it corn syrup with a vitamin pill.
I made the opposite jump after years on that stuff (Modulen IBD in my case).
You have to do what you have to do though. :( I remember my parents bought some of eBay or Amazon. Expensive stuff.
I would probably try SCD again after the EleCare. I'm so sorry it hasn't worked so far. :( I know that place where all you want is something to work, something to stop the pain. I've been on everything single drug for Crohn's. There was nothing left except a permanent ostomy, which wasn't even a guarantee.
I hope your son soon receives his solution, so he can live a normal (or as close to normal) life like I am now. It can happen. :)