I'm honestly not sure where to begin or pick up from last year. I'd like to publish a more detailed versions of this journey, but for the moment I will give the condensed version.
Lucy has fructose malabsorption, no doubt about it. At the end of September, we treated her for SIBO (Small Intestine Bacterial Overgrowth) again, this time with rifaximin. Partway into treatment I wasn't seeing any changes, so added in the SCD diet crossed with FODMAPs, and she had all kinds of die off symptoms like body aches, etc. It was working!! When it was all done, though, we still were not seeing much in the way of symptom improvement or food tolerance. I decided to make a Skype consult appointment with Dr. Allison Siebecker, renowned SIBO doctor and naturopath from www.siboinfo.com. She was absolutely wonderful, and we discussed all different types of treatment options, and decided to ask our pediatrician to prescribe the lactulose hydrogen breath test (HBT) to see if her SIBO was truly gone. Lo and behold, it was! Which was concerning to learn, however, because she was not feeling better. Dr. Siebecker talked me down though, and was very helpful and encouraging. We designed a course of action. I had just started her on 5HTP again even though in the past it had given her heartburn because it had also helped with relieve her visceral hypersensitivity. The GI had offered to put her on amitryptaline, an antidepressant commonly used in a lower dose for various GI disorders because it increases the serotonin not just in the brain, but in the digestive tract where the majority of the body's serotonin is actually used. He had told us over the summer if it works, then he would much rather she use a natural drug vs the prescription one. We had to abandon it after a week though because of the side effects she developed (abdominal pain and reflux.) I did some brainstorming this time and wondered if taking licorice along with it would negate the side effects...and it worked!!! We had also discovered on Halloween when I let her binge on treats (and she subsequently had a great night) that she not only tolerates sugar, but for some reason thrived on it. A little bit of research revealed that in order to make and use serotonin, the body needs more carbs. Sadly with the restrictions of fructose malabsorption and SCD, she had few sources without overloading on fructose. We the trailed raw milk, and she did great! This was a huge relief, because I was considering getting the expensive elemental formula for her again, Neocate Splash, to help supplement her diet. Instead, I was able to use fresh, natural milk and I would sweeten it up to make a homemade kind of formula for her. (And yes, it is counterintuitive to give your kid extra sugar on purpose, but even Dr Siebecker thought this was a great solution for her. She didn't have SIBO anymore, and her body not only tolerated it but THRIVED on it!) For the first time in her life, Lucy was going days and days with NO PAIN!!! We gave her fresh colostrum, zinc carnesine, l-glutamine, A, D. We used low dose erythromycin for gastric motility before bedtime, along with Align probiotic for motility and gut health. (What was really interesting was that when we started the Align immediately post-rifaximin, she had more die off from that for a couple of nights...so we made huge strides in her gut flora.) Align is recommended by Dr. Weinstock and others for nighttime motility (which can contribute to SIBO.) We also used Kirkman's enzyme with Isogest and Urban Moonshine Citrus Bitters to aid her digestion and healing. In the next few months, we watched our little blossom into a happy, energetic, silly little girl. It has been an AMAZING transformation!! We went to Bush Gardens Christmastown a week before Christmas, and whereas in the past she would ride in the stroller 90% of the time...this time she not only walked but RAN 90% of the park!!!
Lucy is now eating a low FODMAP diet. We are still figuring out all the things she does and does not tolerate, but her diet is ginormous in comparison to what it was a year ago, and she feels like a million bucks. She has gone from the 24th percentile in weight to the 44th percentile!! A few weeks ago she even started eating starches again with Kirkland Carb Digest enzymes on board, and it's going really, really well for her. I honestly wondered if we would ever get to this place for her. She now only has pain when she eats a wrong food by mistake or when we trial something new that doesn't work out.
