Captain’s Log, and it only feels like day 10089
In reality, we just completed day 18 of our 84-day program (not day 10089) but some days it feels like we have been doing this forever. The problem is, once we removed the antibiotic support from the kids, they regressed pretty badly and they are now having one flare after another. This can make life super challenging at the best of times, even just doing basic stuff like grocery shopping or laundry is hard. The oppositional behavior and the irritation are always at maximum overload, which really isn’t unusual but it is certainly been made worse with all these changes.
In PANS kids, behaviors that assist with the diagnosis often exacerbate during a flare, so obsessive-compulsive behaviors or thoughts, severely restricted food intake, exacerbation of neuropsychiatric symptoms, anxiety, emotional lability and/or depression, irritability, aggression, and/or severe oppositional behaviors, age regression and coping skills, motor and/or sensory abnormalities, urinary frequency (which can be highly inconvenient when running errands in a place where NO ONE allows you to use their restroom even if you purchase something from the store) and of course good old sleep disturbances. Read more at PANDAS PPN. These disturbances make everything a little more entertaining and adds spice to an already challenging adventure.
So day 18. Do we see any progress yet? No. None. Still pretty much status quo at this point but truth be told, I would be shocked if after 12 years we saw an immediate improvement.
What do we see so far? We have our new routine down pat. The alarm on my phone rings morning, noon and night and the kids follow along checking the boxes in their folder. Tinctures three times a day targeting Lyme, biofilm, and candida, and then additional supplements supporting detox and rebuilding the immune system, and adrenals, etc. The kids are also following a no sugar, no soy, wheat, dairy, corn, or rice diet and avoiding all fruit and starchy veggies. It was tough to convince two sugar, carb addicts to change their ways cold turkey but they are doing it and they never waiver, even in the face of traditional summer temptations like ice cream and cotton candy. When all is said and done, they really want to be well and are putting in the work to get there.
Other than that, twice a week on Monday and Friday afternoons we go to the clinic. Once there, the kids do short bursts of exercise, breathing, foot baths, an adjustment, cold laser therapy and finally a quiet 22 minutes of brain music, then we head back to the camper. In our downtime, we have kept ourselves super busy which is fairly easy because the beaches here are really spectacular. So while our exodus from South Carolina was fast and seemed frantic, we are making it work for us. The camper could be bigger, the progress a little faster, but for now we are committed to taking the supplements and going into the clinic biweekly. Week 4 is just around the corner, we are ready to see some progress.