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

Advocating

Advocating for Better It boggles my mind, that we still have only have two major clinics treating our kids (at least publically) for this neuroimmune issue we have termed PANS and PANDAS, which begs the question – why? What is it about our kids that says to doctors and medical professionals “hmm, best not dig too deep on this one, give them XYZ medications until the parents move on and then we can all move on”? Are my kids not worth the trouble? Do my kids not deserve to get the same respect and reverence as a child with say diabetes? Seriously, what is it about our children that makes them seem not worth going to bat for? It’s an interesting conundrum really when you think about it. Parents bring in a child who is ramped up, distressed, OCD with intrusive thoughts, or TICS that are debilitating or complex, low tolerance to stress, learning abilities shot to bits, challenging behavior, depression, super high anxiety and very often suicidal at a really young age, and it is typical for the family to be told: “hmmm, could be ASD, could be bipolar, could be ADHD, we don’t really know but let’s move you into mental health, perhaps some OT and we...

Life after treating Lyme

What’s life like after treating Lyme? January marks month 7 on Laser Lyme protocol. Where are we now? It’s been an interesting few months, new moons, full moons, Christmas, Halloween, New Years, quite the plethora of reasons to expect hyperactivity, tiredness, and general backsliding. To keep that in check, we still remain true to our NELL protocol, but with the kids back in school, hubs back to work and my commitment to campaigning for legislative changes here in the state, it could easily slip away from us. That aside, where are we now? Are there regrets over that long summer in the camper in NE? Have we seen any further progress? How are we maintaining? Well in true and typical fashion nothing is very easy or predictable but we are still sitting around 80 & 85% – we haven’t made any real progress forward in the last few months really but the good news is – we haven’t gone backward. That alone is worth celebrating. We have continued to follow NE Lyme Laser protocol because it is working for us (although we don’t do the exercise and oxygen every day, or the footbath every week, and we have also not been to a chiropractor since we got back), but...

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...

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....

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...

Returning home from Lyme Laser Treatment Centers of New England...

Returning home from Lyme Laser Treatment Centers of New England Day 75 We have been home now for 5 days and I can honestly say the adjustment was slightly chaotic. We haven’t really unpacked yet but supplements still must be given on time, as per our previous schedule. It definitely has taken more than a couple of days to get back to a routine, now it’s Saturday and we finally executed our schedule perfectly. I have managed to source some of the pieces of the program that we would like to continue at home, so while we are technically finished at the clinic, we will maintain the supplements, footbaths, exercise and diet schedule for many months going forward. We, of course, brought a large bag of supplements back home with us, but they have been reduced now we are in maintenance mode. Overall, the progress continues. Both kids are adamant they are happy they did the program, annoyed at missing summer with their friends but feeling about 70% better than they did when we left.  I am a little nervous because if we were in MA still, we would not be in maintenance for another week or two. I am praying it doesn’t set us back because we left early....

Interrupting regular programming…...

TEN THINGS A NEWLY DIAGNOSED PANS/PANDAS PARENT NEEDS TO KNOW Interrupting regular programming to talk about chronic Lyme and PANS/PANDAS and Neuroimmune Diagnoses My children and I are in NE treating Lyme, this is true, but the chronic condition my children are diagnosed with is actually PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome, OR as it has morphed across the internet from the original moniker – Pediatric Autoimmune Neuropsychiatric Syndrome). This basically means my kids both have neurological and physical challenges associated with their illnesses. I created this document for the parents who find their way to our Facebook Group. Our, meaning an organization I am currently working with. PRAI is a parent-led grassroots organization focused on educating the community on better recognition of PANS. We are reaching out and speaking with doctors, schools, and therapists in South Carolina (North Carolina and Virginia) as well as asking for an advisory council in each state. I also thought this might help anyone who finds my blog get up to speed on the acronyms and message board topics should they wish to explore the topic further.  (Someone recently told me this was overwhelming. I agree, it probably is. Bookmark this page, print it off, make notes, rest assured you will come back to...

New England Day 61

New England Day 61, Lyme Laser Treatment I am updating a little faster than is typical for my crazy hectic schedule simply because we finally have good things to report. Yesterday, on day 60 –  B told me, “I am so happy with how much progress I have made since I have been here, I can’t tell you why I feel better, I just remember that this is not how I used to feel!” Add to that, his long term memory is coming back, sleep is coming easily and I think we may have finally started the shift we have been hoping and praying for or at least we are heading in the right direction. Additionally, the other one is consistently waking up without the trademark black eye circles (typically an allergen but to what we have never been able to pinpoint), and we seem to have the hypoglycemic rages under control. We really enjoyed a full day yesterday of shopping and she complained of zero foot pain. Those feet have hurt all the time for a very long time and typically, after an hour or so, she will be so exhausted she will want to go home. Not so yesterday. We have slowly been increasing her stamina by walking...

Things I learned in MA

Things I Learned in MA… Thinking this trip through before we left I knew there were going to be additional challenges over and above managing the kid’s behaviors and treatment compliance. First of all, I am scared of the dark, secondly, I am afraid to be alone at night while I sleep! Two major obstacles especially for someone who was considering living on a campsite, away from landline phones, 24/7 alarm monitoring, solo with two kids who require 24/7 management. The whole idea had my imagination in overdrive. Not to the point where I considered not coming, but I knew it was going to be a real test of my own strength and determination during the three months we would be here. Honestly, with less than 2 weeks to go, I am pleasantly surprised and a little impressed with my ability to buckle down and just make the best of what we have done. Weirdly it has also been far easier than I envisioned and certainly not even close to as scary as I initially imagined. While it is true the cooking al fresco and the laundromat situation drive me insane, conversely, the simplicity and small space make any house related stress impossible. It also turns out I do know...

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