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...

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,...

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. Dr. Wine is confident in our recovery from here as long as we maintain the program, but I have had so many false starts during our journey, I am always just really nervous about going backward. So week 11, now behind us, heading into week 12. Really nothing drastic to report, just more of that steady climb upwards to feeling healthier. If you ask my kids, “do you think it was worth it?” they now reply with a resounding “YES!!” which makes it so worth the sacrifices we all made to get there. They are definitely feeling better each and every day. One still has frustration and is still experiencing some obtrusive/obsessive thoughts, the other is feeling nauseous on and off, which has been an ongoing issue. We think it is related to candida and food intake. We will hope that as that resolves (Dr. Wine’s protocol addresses that), nausea starts to remit as well. Anyway, first two days back to school went phenomenally well for both. The one with memory issues was happily surprised to find that everything stuck during the first days of classes, this was one of our greatest hopes going up for treatment. The memory issue in conjunction with poor processing has been a great source...

Interrupting regular programming…

I am interrupting regular programming for a second… Chronic Lyme and PANS/PANDAS and Auto/Neuroimmune Encephalopathy 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 are find their way to our Facebook Group. We, as an organization, are currently working toward better recognition of PANS with doctors, schools, and therapists in South Carolina (North Carolina and Virginia) and I thought this might help anyone who finds my blog quickly get up to speed on the acronyms and message board topics should they wish to explore the topic further. TEN THINGS A NEWLY DIAGNOSED PANS PARENT NEEDS TO KNOW Understand the diagnosis and acronyms: PANS stands for pediatric acute onset neuropsychiatric syndrome, this acronym is also sometimes expanded to pediatric autoimmune neuropsychiatric syndrome. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subset of PANS. There is also another (older) acronym – PITANDS, which stands for Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders. “The NIMH Investigators discovered that the OCD, tics, and other symptoms usually occurred in the aftermath of a strong stimulant to the immune system, such as a viral infection or bacterial infection. The first cases were given the name PITANDS for Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders. The first reported cases of PITANDS followed infections with influenza, varicella (chickenpox), and streptococcal bacteria (strep throat and scarlet fever). (See Reference #3 for descriptions of the PITANDS cases.) Later cases were reported to occur in association with Lyme disease and mycoplasma infections (“walking pneumonia”). The NIH investigators chose to focus on OCD symptoms that occurred after streptococcal infections (the PANDAS subgroup) because of a connection between OCD and Sydenham chorea, the neurological form of rheumatic fever.” https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml Who is Susan Swedo, MD? “Susan Swedo is a researcher in the field of pediatrics and neuropsychiatry, and since 1998 has been Chief of the Pediatrics & Developmental Neuroscience Branch at the US National Institute of Mental Health.” Wikipedia. Swedo wrote the first paper on PANDAS.in 1998. “In the early 1990’s, investigators at the National Institute of Mental Health (Drs. Susan Swedo, Henrietta Leonard, and Judith Rapoport) were doing studies of childhood-onset OCD and observed that some of the children had an unusually...

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 around the campground three times a day so perhaps that is helping build tolerance but overall it was really a good day yesterday, at least on those levels. Anyway, another full day of shopping, school looms and every single thing must be new for their return. I am so happy New Hampshire is super close and tax free every day 😉 wish us luck on our quest to complete that shopping list. Happy weekend everyone. Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

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 how to change gas bottles, light pilot lights, replenish toilet enzymes, and even remember to purchase biodegradable washing soap. To my credit, I have fixed beds, hung tarps, taken care of copious rain related issues, made campfires and even chosen to re-caulk the bathroom fittings – a job poorly executed by the fabricators of our little Jayco. I have totally proven to myself that I can clean, cook and live quite easily in this tiny space all while taking care of these two whirling littles by myself. Plus my neighbors are awesome. Being so close to the beach, the campsite is full of “seasonal” campers, these folks come every year and stay for the summer. Most are long time residents here and there is a real community of friendly, fun and hospitable folks, which makes it all a little more enjoyable. … but honestly, I hate it. I don’t mean I hate parenting solo or taking care of everyday challenges, or even camping, I mean I just hate being away from my husband. For sure, I already knew that I relied on him for plenty at home. He thankfully takes care of things I can’t while I take care of the kids and sometimes that’s a lot because my health...

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 remotely artificial. No “added” nitrates, no fillers). Truthfully, no one is more shocked than I that both my children have complied. Note I didn’t say willingly, I simply said: “complied”.  As a result of eating this way, we have all dropped about 10 pounds each and now walk around happily hiking up our pants while lamenting about the days we used to enjoy a good strawberry donut from the Peach Stand. Maddening because outside our campground home there is a drive through for Dunkin Donuts. This location taunts us every time we leave, but resist we must and we do. As far as diet goes we generally stick to meat, fish (occasionally lobster), veggies and now finally after day 36, they are allowed very limited access to fruit. The only downside for me is that now my days begin with a frying pan in one hand and breakfast supplies in the other. I traipse outside in my PJs and light our small camping stove. I imagine this is how the pioneers felt minus, of course, the refrigerator, propane stove, air conditioning, fans, fresh eggs, indoor plumbing…. well you get the picture. I do have to wash the pots by hand so that counts as a hardship – right? Anyway, every...

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 adventure. So day 18. Do we see any progress yet? No. None. Still pretty much status quo at this point but truth be told, I would be shocked if after 12 years we saw an immediate improvement. What do we see so far? We have our new routine down pat. The alarm on my phone rings morning, noon and night and the kids follow along checking the boxes in their folder. Tinctures three times a day targeting Lyme, biofilm, and candida, and then additional supplements supporting detox and rebuilding the immune system, and adrenals, etc. The kids are also following a no sugar, no soy, wheat, dairy, corn, or rice diet and avoiding all fruit and starchy veggies. It was tough to convince two sugar, carb addicts to change their ways cold turkey but they are doing it and they never waiver, even in the face of traditional summer temptations like ice cream and cotton candy. When all is said and done, they really want to be well and are putting in the work to get there. Other than that, twice a week on Monday and Friday afternoons we go to the clinic. Once there, the kids do short bursts of exercise, breathing, foot baths, an adjustment, cold laser therapy and...

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. I am scared they will not have productive employment, I am terrified they will not find a functioning relationship and most of all, I am petrified that they will choose to exit life before we have a real chance to treat what ails them. I am tired of the anger and tired of the rages. I am tired of the cursing and the stress, the derogatory statements. I am tired of the doctor appointments. I am tired of nightly bed checks. I am tired of worrying about self-harming and self-abusive behaviors. I am tired of organizing supplement trays and begging my kids to take them. I am tired of keeping journals and tracking behaviors. I am tired of spending summer away from home for treatment. I am exhausted knowing that at our age, we have to rebuild our retirement fund. It is all of THESE things that drive me to keep throwing money, we no longer have, at both useful and useless treatments with expensive alternative doctors. So there you have it, it’s pure fear that drives me not my undying strength or my warrior disposition. Truth be told, my fight left a long time ago, I truly am exhausted and all I feel these days is a strong urge for flight. My autonomic...

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