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

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....

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...

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...

Options for IEP and 504 kids who are still failing…...

Life for us is a mad scramble, every day the same but different.  Again, other parents drop their kid at the school gates and kiss them goodbye until 3 pm; whereupon they pick up their dysregulated, tired but usually happy, child.  I on the other hand drop my kid off at 8.20 and run home, jump in the shower and wait patiently for the phone to ring. Sometimes we actually make it to his allotted pick up time of 11.35 am but more than once the phone has rung around 10.30 with a “Mrs… please come and pick your son up, he is in the office blah blah blah”  It is not yet 4 weeks into the school year and we have already had an agreement for early dismissal, 2 earlier picks ups and 1 afternoon suspension. I feel for them, I really do. Because I screwed up and got frustrated with his first round of public schooling and placed him in a private school to try to minimize the impact of life (subsequently home schooling for the 4th grade), his IEP went dormant.  Fat lot of good that one was anyway. Regardless, I should have fought harder for what he needed, but instead I was ignorant and we...

Now to what we really believe is going on… Reactive Attachment Disorder (RAD) a spectrum....

Anxious attachment, adoption trauma, anxiety, borderline personality disorder… Sadly From Survival to Serenity no longer encourages the sharing of the graphic but if you want to read further, and I heartily encourage you to, on Saturday, August 23, 2014, From Survival To Serenity published a post titled: Educating About RAD.  If you read my last post you can tell school is an exceptional challenge already this year.  I will be using parts of From Survival to Serenity when I go on Monday and advocate again for my child.  It won’t solve the issues he is having, (thankfully his teachers and principle are determined to help him stay the course), but it will possibly help explain him.  The post has some very practical, well presented information that in turn can help any of us with a RAD child (however mild or extreme) educate the people who are charged with taking care of our little peanuts for the better part of the day.  Forewarned is forearmed as they say! 😀 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...

Their uniqueness may very well be their strength in the future …...

But we must get them there before that can happen.  The only problem is getting others on board with that philosophy too. Society has an ingrained need and desire to make everyone conform to their own standards, especially true of public schools.  Often the desire to drill down and over focus on the negatives drives many kids to act out more not less. Even if your child has no diagnosis of Tourette Syndrome, I found this very concise rundown of behaviors than can pertain to so many different issues we see with our kids, both diagnosed and un-diagnosed. Understanding Behavioral Symptoms in Tourette Syndrome.  “… Children with TS may be punished for symptoms and behaviors that educators decide are disruptive andpurposeful.  Even an empathetic teacher who recognizes the student as a child who has abilities, may be frustrated because of the difficulties in understanding the cause of the behavior. Dr. Ross Greene, noted psychiatrist and author of The Explosive Child, and Lost at School, writes that, “It is your explanation of the behavior that leads directly to how you respond to it.” If, for example, your explanation for a child rolling his eyes while you are speaking to him is that he is being rude and disrespectful, your response might be to reprimand and discipline him....

« Previous Entries Next Entries »

© Loving the Spectrum