It’s been almost 2 months since I’ve updated my blog which is a very long time for me, but there has been a lot going on at our house and consequently a lot going on inside my head. I still don’t have the answers, but I would like to pen a few words to sum up what has been going on around here.
We went to Memphis to visit family twice this summer, once at the end of July and once at the end of August. Both times, John came back with hives. The first time they eventually went away. The second time they kept getting worse and slowly spread to all over his body except his feet and hands. Eventually his scrotum swelled (from the hives) so we got an after hours appointment to see his immunologist. (Turns out his scrotum swelled up because it was broken out in hives too.) The immunologist also noticed that John had developed an asthmatic cough. He ordered blood work, but we were unable to get it done until after the weekend, so I spent that weekend up every 4 hours with John giving him doses of benedryl large enough for his older sister as well as breathing treatments. Once we had the blood work done we were able to start steroids to give his immune system a kick in the pants. He was eventually doing much better (although the rash on his face still refuses to go away). The blood work raised red flags with the immunologist for possible Diabetes Insipidus, so we got a referral quick fast and in a hurry to an endocrinologist who requested more labs. Then the rash on John’s face started getting worse, so we went back into the immunologist, where we decided to run some more labs (including 23andme genetic testing) to try and track down what is going on with him.
That is the super duper short condensed version of the last 2 months. A LOT more has been going on than that, but I don’t think I can actually put it all into one post. Many different things are being considered with John at present: Diabetes Insipidus, Immune Dysfunction, Mitochondrial Disease, MTHFR genetic mutations, other food allergies/sensitivities, etc etc etc.
We have also significantly limited our diet trying to make sure that we hadn’t added in any foods that might be causing the problem, so currently we are adding foods one at a time on the Paleo Autoimmune Protocol. We have currently added most of the meats and most of the non-starchy veggies successfully. Any meats that are not wild or 100% verified grass-fed were making me sick (possibly the kids too but they don’t always communicate these things effectively). The starchy veggies appeared to be feeding our systemic yeast, so we are currently off those and on the highest doses of Nystatin our doctor felt comfortable prescribing. We are hoping that the combination of the Nystatin, super restrictive yeast diet, vitamin D (for the digestive tract and immune system), probiotics (soil based capsules, lacto-fermented vegetable juice fermented in an airlock container, and enemas…the kids thought that was awesome….anything related to poop is great fun if you are a small child!), and a few other supplements our doctor recommended we try out on me first…..hopefully all of that will at least get rid of the yeast.
Jess and I both have an MTHFR genetic mutation that affects our body’s ability to methylate (or get rid of toxins in the body) so that is the next thing that we need to look at with me and Jess. Hopefully that will get us pretty close to the end of our journey. John on the other hand….there are still a lot of unknowns. Does he actually have Autism, or does he has an underlying medical condition that has gone undiagnosed? We don’t know at this time.
How are David and I doing? Well we are tired, and we are trying to streamline life as much as possible. I am beginning to feel more positive and upbeat about things than I have been (which is a little surprising to me given what all has been going on). I think the biggest difference for me has been making changes in the way I am managing our home. I am spending more time at home which means I have more time to take care of our home and especially preparing the mountains of food we eat each day. I am also beginning to start adding some things back in that are very important for centering our family….things like family Bible study, homeschool lessons (minimally), tea parties, etc. I have also recently enjoyed having Jessica and John help prepare dinner, and I joined a local ladies Bible study, which I think will prove to be helpful with re-centering myself, our home, and our family. I am also taking joy in the new things I am learning about because of our health issues: how to butcher and pluck a chicken, how to make fish jerky, how to cook frog legs, sardines, squid, and much much more. More to come on that later. I have work that needs to be done and have probably spent to much time penning this update, but it is nice to be able to get out!