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CFU rollercoaster

Updated: Oct 9, 2023

Tula continued to make great strides and we all loved to hear her laughing and communicating with us, instead of incessantly talking about Mr. Noodle from Sesame Street! After Tula was able to tolerate a half cup of coconut kefir per day, along with a quarter cup of cultured vegetable juice, we started adding probiotic capsules back in the mix. We were taught that if the capsules were taken along with a fermented liquid, they were more digestible and had better survivability, making them more effective. We would open up the capsule and pour the contents in the kefir, which were thirty billion CFUs (colony forming units), with at least a half dozen strains. We did this before bed, a couple of hours after dinner on an empty stomach. Since the capsule never did much before, I didn’t expect a die-off to happen now. I was wrong! Once again, the power of the kefir brought the capsule to life and Tula had another big die-off. There is so much guesswork with these supplements, but everyone's body is different, so it will never be an exact science.

We reduced the number of CFUs so this die-off would be tolerable. The goal was to eventually get to fifty billion CFUs in order to introduce different strains of bacteria, as well as increase the probiotic count. We also learned to switch up the brands of probiotic capsules every time we bought a new bottle, and then we eventually ended up alternating them every three days, which meant always having three different brands of capsules in our fridge. Over many months, we kept upping the CFUs, causing several difficult die-offs. And with every die-off, Tula spoke more, increased her vocabulary, and improved her eye contact. If anyone ever says this is a quick and easy process, they are surely wrong!

We added a powerful probiotic called VSL#3 along with the kefir, which has a very high CFU (colony forming units) count. Once again, she started aggressively biting, hitting, and biting and sucking her sleeves until they were shredded. She was also having nightmares. We stopped the VSL#3 and these behaviors subsided. We decided to stick with the lower CFU probiotic capsules since Tula was already having enough die-offs. The inventor of VSL#3 left the company and started a new one called Visbiome (it seems the original company was sued by the inventor and now VSL#3 is different than the clinically tested product). We did use Visbiome later on. Klaire Labs Ther-Biotic Complete is another high CFU count probiotic, and we have used spore based probiotics in the past such as Just Thrive Probiotic. Body Ecology has many great probiotics also. At this time though, we wanted to stay with probiotics around thirty billion CFU’s until the die-off behaviors subsided, then we would increase.

There were plenty of days I felt so stressed I couldn’t go on, but had to. Other days I yelled at the family too loud and too often. I had lost my marriage once but still couldn’t put any time into the fragile union that it was now. I had so much guilt over Thalia. We were totally focused on Tula, while Thalia was this intense, incredibly smart child who demanded our attention—yet, we could only give her so much. At least we had one on one time with her while Tula was in ABA therapy. Yes, it was AMAZING that Tula was making these great strides, but because of the die-off roller coaster that she was on, the stress in our house was still mighty high.

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