2 PANS kids fighting lyme and coinfections, our journey to healing
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Mental Health in America

MENTAL HEALTH in America (and probably the rest of the world… my perspective) This week another mass shooting in a school by a child (almost adult) whose story is not yet fully known but already presumed mentally ill. The “he was different” conversations and the words “adoption, and fetal alcohol syndrome” have already been bounced around. People want answers – they need to rationalize why. If we can see this person as an anomaly, if we can blame it on mental illness then we can pretend this is beyond the realm of a “typical” person and move on knowing it wasn’t our fault. First, we must pause, we need to remember all the children and adults who have died from this violent act. We must remember and pray for those parents and spouses who will never see their loved ones again, all those hopes and bright futures washed away in a second. The sadness surrounding that for me is palpable. I can’t fathom the depths those families will reach while going through the predictable stages of grief. I think it would be my nature to remain stuck in anger and disbelief and so I pray these families are able to move beyond those basic emotions, simply for their own healing going forward. Hearing and reading reports of the tragedy, I am struck by the words describing the children who lost their lives. So much to be proud of, it makes me think “those characteristics are what I want in my child”. The words all describe hard-working, productive, motivated children. That’s how I would want my child to be described if someone was talking about them. “Kind, enlightened, joyful, hard-working” all positive adjectives to describe the children who are gone. Bright stars taken by someone who had no control over his emotions, someone who was the total opposite of those he killed. The words describing the shooter are all antonyms “weird, odd, loner, obsessed” words that help us rationalize and comprehend something this heinous? We know that the police were often called to his house as a teenager and we also know this boy “lost his mother to pneumonia in November last year, and his father many years ago.” These are not EXCUSES, there are just no excuses for what he did yesterday. His lawyer describes him as a broken, sad human being, it is a description that may make sense to us but being sad and depressed does not explain why he did what he did. At best, it gives us...

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 will see you periodically to do errr yeah nothing all over again”. Most doctors first, of course, run rudimentary blood work, a CBC, CMP, maybe thyroid, cholesterol, even an MRI and perhaps an EEG, but what about digging deeper for the reason for this chaos when nothing obvious shows up? Why is no one looking for the complex clues? I like to think it’s a mandated time thing, not a – not wanting to dig deeper thing. We are waiting for them to say, “why is this child off the charts? What happened to this kid, why are they acting out, hitting their siblings, cursing at their parents, running away from school??” but they rarely do. I don’t believe the majority think this is just bad parenting or a “bad” child thing either. Although there are certainly some that wonder if our kids just came out this way. “Sorry chaps, terribly bad luck, you just got a badly behaved child” or they think this is a genetic predisposition that is exacerbated by who knows what… but why, for the most part, don’t they show a spark of curiosity for chasing down the trigger? Maybe the conversation in their head goes “whoa, I have no idea what this is but it looks...

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 we do take the drops religiously every day, 3 times a day to keep the Lyme at bay. We have also chosen to work with a nutritionist (Real Food Rebel) to try to address some other areas we know we have challenges in. We completed hair testing and in light of that Brenda at Real Food Rebel has determined a targeted supplement regimen for us. Now we follow a program for healing their digestion challenges. My kids continue to do “ok-ish” on both of these programs combined. The rashes are going or gone, skin is becoming clearer and overall the kids are functioning at home and at school, which is helpful for us all. One little bump in the road is that we are having to remove the amantadine that proved so beneficial in the beginning. If you read back through old posts, after much trial and error (actually 15 different trial and errors) our doctor had prescribed amantadine – just to try and affect some positive change in impulse control. Starting amantadine is what we now refer to as a turning point for our family. Initially, we didn’t see much progress on just 100 mg once a day but once we went to the twice-daily dosing schedule, we started...

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…

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 this information (not just here but across the web) time and time again and eventually you will be adding things to this list. As a new parent thrown into this – it is shock and awe, but you will quickly grasp your bearings, begin researching and before the clock strikes midnight, you will realize you have searched Pubmed backward and forward and are arguing treatment protocols like a pro! Read this once, keep it, pass it along, read it again, and when you know more, come back and update us, please. Crowdsourcing works for all kinds of things now, why not healing our children?) TEN THINGS A NEWLY DIAGNOSED PANS PARENT MIGHT NEED 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...

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...

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