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

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...

What happens in our downtime?

Being forced to spend 12 weeks in MA is not the worst thing that could happen. Beach and sun are good for everyone. http://www.dancingnakedaroundbonfires.com/wp-content/uploads/2017/06/File-Jun-16-12-26-53-AM.mp4 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...

What a week!

What a week this has been! We arrived in Salisbury, MA., last Sunday after two arduous days driving from South Carolina. Saturday was gorgeous, Sunday not so much. Torrential rain fell almost the entire way.  We snuck onto our campground right before the closing bell at 8 pm. The 13 hour and 16-minute drive turned into a whopping 20+ hours. Traffic and weather all conspired against us to block the views and turn a relatively doable two 7 hour days into what it actually ended up being – but we made it, road weary and full of anticipation. Once we got to our assigned camping pad, we set up shop. We do not travel light so this was no mean feat. Several hours after we arrived, two soaking wet and absolutely exhausted parents fell into bed. S certainly took the brunt of the rain as his outside duties when camping far exceed mine and for this, I am eternally grateful. 😀 Monday morning at 830 am we reported to the clinic. Everyone was super nice, chatty and helpful. .We had to take initial assessments which took us a shade over an hour. As is typical, the girl did her own but the boy face deep in his phone had me fill his out, really it was just too long for him to maintain his focus and that’s one of the reasons we are here.  We got through that assessment the best we could while we had an opportunity to chat with more people completing the program. We got that opportunity when we first arrived as Monday morning is very busy. I was grateful, this certainly helped tremendously to alleviate any doubt we initially may have had. I do hate that I am now so skeptical about everything but honestly if we had $100 for everytime we had heard “those other people are …. of course we can help you” we would, well, we would probably have all our retirement back 😀 After our tour and the assessment, Monday became a free day. Dr. W and his staff had spent a lot of time with us, showed us around but we could not really get started until Dr. W had taken the time to review those assessments. To our delight, they really appreciated the fact that we drove from out of town and knew we had to be back in SC to begin school the third week of August, they were diligent in putting our individualized program together in a timely manner...

PANS, PANDAS and Lyme Disease – what’s the connection?

PANS, PANDAS & life after a diagnosis of Lyme Disease So in the 3 years since I put away my keyboard and started focusing on other things, a lot happened in our lives. In August 2014, when I wrote this post, I had no idea what was even possible for us going forward. We had settled into the uneasy idea that our underlying issue was simply developmental trauma disorder or another genre of attachment disorder. We were sold on the idea that the emotional trauma from being placed for adoption at birth had altered his ability to reason rationally. Therefore, the residual pain and anger over this rejection were driving the outrageous behavior we were and had always been seeing. Everything I read about the different attachment styles matched much of what we were challenged with at home. It seemed to fit the best of what we had heard so far. Following that path of reasoning, we found and paid a searcher $1500 who set about finding his birth family. It took less than a month and we had a real, valid, biological connection for him and several months later we headed to his birth country for a family reunion. While this genuinely touched his heart and shifted his perceptions about his adoption and his birth mother, it didn’t help stabilize any of the behavior. The rages, the uncontrollable depression and the gnawing anxiety remained constant. His birth mother was overjoyed with the reunion and we still gratefully maintain the connection with his birth family. After we returned from that trip, it was interesting because we did see part of his personality shift. He became less aggressive toward me, but instead his anger became more directed at himself. It did give him some peace over his identity but he still struggles with not looking like us. Being part of a mixed race family has its own group of challenges, none insurmountable, but it definitely adds an extra layer to be aware of. Anyway, once he finally knew who he looked like, he knew she cared for him, he knew that she thought about him often, he talked less and less about being rejected and more and more about just feeling hopeless and joyless.  The birth family connection had not lifted his depression at all, but he does has a deeper peace and understanding in regards to his birth and adoption which was important to us all. He truly knows that he is loved. Despite that reunion, we were still...

© Loving the Spectrum