2 PANS kids fighting lyme and coinfections, our journey to healing

How Many Times…

How many times … I had reason tonight to go back over a series of blog posts about a program we had completed in 2011. As I was reading through the Brain Balance blog roll I realized we had actually finished that program with hope in our heart and a skip in our step. Okay perhaps we were not quite that enamored but certainly, we felt like we were in a really good place. When I wrote any of those earlier blog posts, I had no idea that those brief periods of respite (that we celebrated so much) would last a few months and then cycle right back around again. In reality, by the end of 2013, we had cycled into a far worse place than we had ever been before. If you have read this blog from the beginning you will know that that was quite an achievement. By September 2013, a truly awful milestone had been reached. So even though we had enjoyed slightly better behavior, slightly less stress, slightly calmer days and nights, and definitely more cognitive ability during those 12-18 months after the BB program, it didn’t last, because in our world recovery has never lasted. Why even write the blog? I don’t make money doing this. I lose sleep because I only find time to do this late, late, late at night. I don’t have a million subscribers or even a YouTube channel. I often ask myself what’s the point, why do I keep writing this? Living in the chaos that stretched into years, I knew I would forget the nuances, the little things, the truly chaotic nature of what was going on and when? Although it probably would be better for us all if I had just forgotten a lot of what happened and moved on. Initially, I truly hoped someone would read what I was writing and say “I wanted to contact you and let you know, I know what this is, I know how to help you” but as desperate as we were that sadly never happened. We spent years hoping for the cavalry and by the time I started writing this blog we were really heartbroken and lost about what was going on with our beautiful, cute, adorable son. It was only many years later it eventually occurred to us WE ARE THE CAVALRY. We have spent years on this hamster wheel, praying to get off never really knowing how but we never stopped trying. I, like millions of other parents, refused...

Lyme Laser – Day 86

 Lyme Laser Treatment – Day 86 Maintaining at home Ideally, we would have only just been returning home from NE. This is a 12-week program but as previously mentioned, we were forced to return home a full 1.5 weeks earlier than we should have. Initially, we figured missing those couple of weeks wasn’t a big deal but it has definitely interrupted the flow of diet and supplement schedules. So yes, now I am wishing we stayed for the duration but as that wasn’t possible, here we are. A few things have happened since we got home, one kiddo is still battling chronic nausea that began around week 8 while in NE, the other still has an infection on the forehead that was there when we arrived. Both kids have returned to school and that’s where we knew we would either confirm true progress or we would crash and burn. So for ease, I will break this down into two parts: Physical and then social – because realistically we struggle with both but they are separate challenges for us. Physically both are doing pretty great (not perfect, but pretty great). Joint pain is mostly gone, for sure neither kid has woken up with “growing pains” since we returned, no more random weird muscle pain in their upper arms and no more strange shooting pains up their legs or in their toes, and of course, the foot pain I have mentioned before – still has not returned. Headaches: These really only affected one kid but they too seemingly are gone. We are still struggling with braces (orthodontics) pain in teeth and gums but the TMJ-type pain along with the headaches thankfully no longer seems to be an issue. Nausea: As I mentioned, one is still struggling a lot with nausea first thing in the morning, sometimes it’s really bad but regardless it tends to pass about an hour after the alarm goes off. Truthfully it is a little disturbing and we have been addressing it with our PCP since returning home (adding in small carbohydrate bursts, little piece of fruit, no water on an empty stomach, adjusting supplement schedules, small snacks before bed, different probiotics, activated charcoal, famotidine, etc) but it remains the same and I am now leery that it has something to do with the braces situation. Have to research that some more. Stamina: This is an ongoing issue, PACER testing at school keeps triggering asthma attacks. However, the change here is that there is a desire to be fitter,...

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