Mom Julie shared the following with us on a comment. I was hoping perhaps one of you moms might have any suggestions to help her figure out something that she could try to help stop the monthly flares. Please reply with any further questions or advice! You never know when someone else’s trials and experience can help someone else! Thank you for reading and leaving any advice!
Mom Julie wrote:
In some ways we are in about the same place as we were in October. I do think our yogurt maker was part of the problem then and am thankful that someone on this blog suggested that we check that out. Despite the fact that the machine was still relatively new, there was water leaking in the bottom of it. The problem was gradual so our son didn’t notice the change in taste. We got a new machine, he noticed a change in taste and texture, and he was over that flare within a few days. Unfortunately, though, he still has a flare about once a month. The last one was in early January and the last few days has us worried we are headed there again. Although his disease is classified as mild to moderate, having these once monthly flares sets his growth back which is tough for an almost 13 year old boy. We are keeping the diet up and have also had him take s. boulardii and digestive enzymes occasionally. Of course, we wish we could determine what causes these once monthly flares. He’s been on the SCD for almost 10 months now and still has not tried raw veggies or most raw fruits. Fortunately, he is an optimist and has such a great spirit. He tells me he is not worried about his weight and never complains about the diet. I hope we can figure out how to get him out of the once monthly flares before having to take 6mp, but after almost a year, I have to consider that we may have to do that. He has been tentatively accepted for the FMT trial. That was supposed to start in December but hit some delays and will hopefully start within a couple of months. It will mean significant travel for us and being away from home, but as you moms know, it will be worth it if it works.
I probably need to incorporate the bone broth on a more regular basis and not just during flare times. We haven’t tried eliminating eggs, dairy (butter and cheese), or honey/fruit because he’s gotten out of a flare while still eating these things. He doesn’t really eat much fruit now, just ripe bananas occasionally or cooked pears every once in a while. He mostly eats eggs for breakfast (and sometimes snacks), meat/fish, cooked veggies, cheese, avocados, some diluted grape juice, and has 2 – 3 cups of the SCD yogurt a day with a little honey in it. I will make almond flour/coconut flour items occasionally and we know we have to make sure he doesn’t eat too much in one day. I feel like we are so close to a sustained remission, but there are just a few tweaks we haven’t managed to identify. Before his diagnosis, he had always grown so incrementally and along his growth curve. The illness has slowed that and, after 10 months on SCD and a year and a half of the illness, I wonder if I’m over-relying on the diet and being overly cautious when it comes to the meds. Regardless, we will maintain the diet as I am a believer in it. Thanks!
Julie I was curious if you are keeping a strict food journal? And if not, I HIGHLY suggest doing so at least the first year or so. And if you are or if you start keeping one, when a flare starts each month, start looking carefully through the 4-5 days before the flare-ups and see what’s similar each month. I know one mom of a college student on the SCD said she could not ever eat a banana no matter how ripe or it hurt her. The bananas are just one thing I noticed in your comment that stood out to me. Another mom I’ve spoken to before was feeding her son fresh pineapple and he was still having cramps. From keeping a fod jornal I realized that my son couldn’t eat fresh pineapple.
I hope another mom will be able to leave some helpful advice that might help! Good luck!!! Keep in touch!