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....

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...

Day 43

Day 43 and we are still here. So we have just passed day 43 of what is technically an 84-day program. Sadly, we will be leaving around day 70-ish because school is back in session on August 17th. The students are returning earlier than usual because of something to do with the 2017 Solar eclipse. To be honest, when school is in session I can barely keep up with paying bills, getting them both to school, managing my own work, their schedules and getting the assigned homework done and handed in. There just never seems to be any time left for anything, so I didn’t really read about what the school board was voting on although I know I really should pay better attention. All I know is this, my kids have to (want to) be back home, all waxed and shiny the night of the 16th so they can begin school with their friends the next morning. Anyway, as is my habit, I digressed… Progress So Far… Well, what have we to report after 6 weeks of treatment? First and foremost we have managed to sustain the keto-type diet we have to follow for the duration of our time here and beyond (no sugar, soy, wheat, gluten, carbs or anything...

Captain’s Log, day 100089

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...

They call me warrior.

They Call Me A Warrior Mom In Facebook groups and chat sessions, parents of children with neuroimmune challenges refer to each other as warriors. After all, we found our way to these groups while fighting for our children’s health, looking for answers to restore their well-being. Each day thousands of parents are exchanging information, collecting recommendations about doctors, finding the latest treatment protocols, discussing the latest studies and deciding where to go and who to see next. I know this word is meant as a compliment, I know it is said with love. These are words of encouragement used by those of us fighting for our kids. This phrase was coined and adopted and so now we are “warrior moms”. However, in my case, I am a fraud. These mothers are wrong, very wrong about me. Truth be told, I am no warrior. The past 12 years have happened, not because I am a warrior but because I am scared stiff of this being my life forever. I am scared that my children will not make it. I am scared that I will have to live in a powder keg for the entire 18 years my children live with me. I am scared my children will need disability forever....

« Previous Entries

© Loving the Spectrum