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

What about me!

What about me indeed…

It’s 6:18 pm and I had just woken up from a nap on the couch, woken by the sounds of my husband emptying the dishwasher and starting dinner. I fell asleep about 5, saying “kids need their meds, I am just taking 5 minutes and then I will get them ready.” Yet, here I was, 2 hours later, off schedule and sleeping once again. I hate napping, it makes me feel like crap. This time was no different. Whenever I wake up, I have to open and close my fists to get my hands working, because lately the little fingers on each hand have a pulsing and prickling feeling to them. It’s a weird sensation because they are not really numb, I can move them, so it’s more like that feeling you get from sleeping on your arm. Anyway, I woke up feeling crappy and guilty about sleeping instead of parenting, guilt aside napping isn’t unusual for me, I nap most days and feel bad every single time but honestly, I am usually just too tired to resist 5 minutes here and 20 minutes there. Anyway, tonight after I unfroze my feet (because they also seize up when I sleep) I wandered into the kitchen to finish dinner. I try for my own sanity to just crock pot, slow roast or Instant Pot everything and today was no different. I was grateful I had put a large joint of beef in the oven before we left today, so at least that part was taken care of.  The kids are getting tired of eating “stew” and soups but my energy is so depleted by dinnertime (and we follow a Paleo diet meaning everything has to be made from scratch), gourmet meals are just not realistic. I do know they are going to get fed. It will be edible and organic and nutritious but other than that, I don’t really know what to do about it all. I just seem to be a slower, less energetic, less motivated version of myself lately. I have mentioned before that I have my own battle with Lyme, even though the official diagnosis is fibromyalgia, yet what to do with this information, I don’t know. I don’t have the energy to even think about it. However, the day may be coming soon when I do

IEP meetings that don’t scare me

Friday was our yearly IEP update meeting for B. Not going to lie, had very few demands or expectations. Was just hoping to keep slipping by and doing what we are doing. Life has become easier and I like it. Again, remember that energy level I mentioned before? It applies to being able to wake up every day and manage emails and phone calls from anyone, never mind school. I just can’t do it anymore. Call me before 9 am and chances are real good I am not answering that call, call me after and I am not making it out the door quickly even if you want me to. There was a time in the past that I would send B off to school, get ready and wait, just wait for the phone call to tell me to come back and pick him up. Years of this, years and years of school management under my belt that I no longer have to be ready for. Imagine that? Just as well anyway, because as I already mentioned, not moving fast in the mornings anymore. If I had to come and pickup early now, I would have to actually shower and change out my PJs first, so fair warning please don’t call me in a panic before 11am, it is just not going to happen.

Anyway, Friday, IEP meeting. Raced to school for 9 am!!! Late (what’s new?), needed to make up time so husband was driving like a boss and we made it there dead on the nose, signed in and immediately, (adrenaline pumping) … have to leave school for a fire drill! I actually wasn’t upset, I went back to the car, spent time catching up on my breathing and finished my coffee. Went back in feeling a little more ready for what was to come.

Meeting went great. B is doing so well we were able to discuss removing some modifications meaning he is going to be more ready for high school classes beginning next year. Yes, B is actually heading to High School. I never imagined I would see the day, I always hoped but truthfully, after so many years of school refusal and school trauma, it was hard to imagine B functioning, happy and actually working toward independence in any classes let alone all of them. He has even managed to go from 4th-grade math to 6th-grade math in less than one year. If he can close the gap that fast again this year, he will enter 9th-grade math classes WITH his peers. Phenomenal and truly an achievement for a kid who was unable to manage life for many years especially after 3rd-grade. Interesting side note: Modifications in an IEP are different than accommodations and in high school that may potentially cause an issue.

So, more progress, more good things, more to look forward to. Treatment wise, both are now holding steady. Currently one (B) 85% recovery (just so many good things happening but still, he finds it challenging to manage stress and I wonder if this is ever going to change just by treating the Lyme). I cannot really say with A, if pushed perhaps about 80% better than when we started, but that nausea really took a toll and caused more stalling and backsliding. Removing the orthodontics (braces) from A’s teeth actually seems to have worked. Nausea no more. Or at least barely ever. She still gets occasional moments when she has to sit down and take a minute but the non-stop never-ending nausea has gone. No Zofran needed for the last two weeks at least. I now believe it may have been a migraine thing, she has/had also been complaining of intermittent pain over her eyes. The nausea was fairly chronic, and migraine makes more sense to me than allergy to the metal in the braces or other reasons why the braces would be the culprit. Maybe it was just the act of moving the teeth or jaw. I don’t know. I don’t but three weeks after taking off the braces, the nausea is slowly becoming a memory so, yeah that’s weird, but everything with us seems to be weird. I personally have learned to stop questioning why and just move on to the next problem.  I think she is still mildly flaring from having the braces on and then off, she is having moments here and there of goofiness, talking nonstop, following me around incessantly and some other PANS-ish symptoms. Again, not super sure why. Could be the cough-cold season, flu season, being back in school or just more of a sawtooth recovery than B. Thankfully, now the nausea has stopped the supplements and herbals are back on board and that’s helping tremendously. I think we will start improving again. So that’s it. I don’t know what day we are even at anymore, I know we have been home for 6.5 weeks and things have been great and not so great, and great again. Little things throw us through a loop but overall we keep improving. I am no longer trying to figure out how to pay for IVIG, no longer looking at rituximab, no longer praying for relief and best of all no more frantic doctor shopping. Good start to October, at this rate we might actually be able to afford Christmas!

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