Question for Moms – Monthly Flares? – from Mom Julie

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!

My thoughts:
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!

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5 thoughts on “Question for Moms – Monthly Flares? – from Mom Julie

  1. Hello Julie,

    My 15 year old daughter has crohns and we were experiencing flars every other month or so. We started working with a functional Doctor that explained that most all people with crohns have low adrenals. This seemed to be a missing link for us in treating her. We did have to pull out the aged cheese and yogurt as we realized we she had an issue with Casin but still had flars. To test her adrenals we did a test called a Functional Adrenal Stress profile 205 B from Biohealth. You mayl need a functional Dr to get the test. Then the child can be treated with adrenal hormones until their own body starts to make them again. In the mean time two great products are Gaia Adrenal Health and Innate Adrenal Response. For the Gaia your child will need to take at least 4 per day and Innate 3 per day. We have also found Boswellia and fish oil to be very helpful for getting her out of flars.

    Hope this helps,

    Barb

    • Thanks, Barb. We have been working with a functional doctor since May. She has been great. Our son takes fish oil, L-Glutamine, and Vitamin D. I don’t think he’s had his adrenals checked, but will definitely follow up with our doctor to see.

  2. Hi Julie — Sounds like you’re on the right track with the diet but there’s one factor in there that’s sending things awry maybe…Paige’s food diary is a very good idea. One thing that stood out for me was the s. boulardii. I wonder if that’s necessary if he’s eating the yogurt? If you noted when he takes that in the food diary as well you might see a connection there.

    I think you’re right about the bone broth. It seems to be tremendously healthful and healing. Maybe try having him have that even daily, even just a cup of it?

    Also, if he isn’t gaining, perhaps it’s because of the calories he’s getting each day rather than the flares…Is that a possibility? Again, with the food diary you could count up calories and make sure he got enough. You probably already know this but you can work good, healthy, highly caloric things like avocados, coconut oil, etc. into his smoothies or when you’re cooking eggs use a good amount of oil, etc.

    What oils do you cook with? I’ve read that these days you have to be careful about olive oil, and get only high quality, certified CA olive oil because the imported stuff is diluted with cheaper grade oils sometimes. Check all your ingredients carefully, even salt. I recently realized that the expensive sea salt we’re using has an anticaking agent in it. I didn’t even think to read the label because it was Sea Salt, I got it at the health food store, and it was $$$$ But, alas…We have to check every single thing.

    My son eats a TON of bananas and so far tolerates them well, but I know that they cause problems for some. He can’t tolerate pears very well or melons.

    How long do the flares last and what symptoms does he have? Are you saying that maybe 2-3 days out of 30 he’s in a flare? (I ask because as someone with a son with a fairly new diagnosis, I’m still not quite sure what constitutes a flare..) I’ve read that when flares occur, people will go to the chicken soup until things calm down again.

    Lastly, your son sounds like a great guy. What a good attitude. And he’s fortunate to have you looking out for him like this. Please keep us posted. We all learn from each other.

  3. Hi MJ,
    Thanks for the suggestions and the encouragement! The food diary has been a tough one for us. He’s almost 13 and so he grabs things from the refrigerator and it’s hard to keep track. It’s all SCD legal, but still it’s hard to keep track. We are cognizant when introducing something new to see if it has an impact. We also just started using an app called My Fitness Pal which has been very helpful. I recommend it for older kids and teenagers so that they have ownership in the process. It also helps him track calories and work toward a goal. You are so right about having to check everything. I recently made the Sweet and Sour Meatballs from the Against All Grain blog. (Delicious, btw.) The recipe called for unsweetened pineapple juice and I got some that seemed safe based on the ingredients list. While cooking it up, I got nervous about introducing something new and checked the BTVC legal list. It said that Dole unsweetened pineapple juice was no longer legal because they add Vitamin A which is bound with cornstarch. Of course, cornstarch is not listed in the ingredients list. I just kept the sauce separate and he ate the meatballs without it. The s. boulardii has actually been helpful. After having these monthly flares for the last ten months, it was recommended on the BTVC yahoo group to curb D. He only takes it when he sees that trend starting. He’s also having a mug of bone broth every day for the last week and said he can tell it helps. We’ve had a good 4-5 weeks and I’m hoping that it will help prevent a flare. The flares are usually short, but include D and then B. When that happens, he does the intro diet for one or two days, the B disappears within 2 days and the D disappears in about 7-10. The frequent setbacks are tough though because he loses the weight he’s gained. We are trying to be conscience of the calories, but our main goal at this point is to heal the gut. He eats avocados, 3 cups of SCD yogurt a day, eggs, coconut oil, SCD legal cheese, etc. We haven’t done smoothies too much as I’m concerned about how he would tolerate them. What kind of smoothies do you recommend starting out on? Thanks so much. It helps to share ideas and concerns with others.

    • Good idea about the app. Maybe that’s more fun for a teen, and good point about them needing to own the process.

      Sometimes even the legal list seems like a moving target. I’ve also read that sometimes honey, if you use that, is supplemented with non-honey if it’s imported … so it’s good to be cautious about your source for that, if you use it. Gosh, I sound so paranoid…

      For my son’s smoothies I use 2-3 c yogurt, two bananas, and handful of frozen berries. 2-3 TBSP of peanut butter as well. Sometimes I throw in half an avocado and some spinach and he doesn’t know it. Talk about fattening. He’ll drink it in the course of his day, some at each meal. Do you use whole milk or even half and half for your yogurt to maybe bump up the calories?

      That’s great news about the bone broth helping, and helpful to know for the future over here too. Do you use chicken or other types?

      My son is 12 and I understand what a tough age this can be…the middle school years… It’s interesting to me that your son’s flares are monthly.. It seems like there *should* be an identifiable something if it’s cyclical like that… But what? I do understand the concern about the medications too…

      Wishing you the best…

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