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 struggling to manage. He was still deeply sad and depressed, he constantly expressed wanting to die, and he was irritable and angry all the time. His self injurious behaviors and obsessive thinking continued without provocation. That same year, he underwent a tonsillectomy and adenoidectomy because of extremely large tonsils and constant strep infections that he struggled with since being a baby, but we also prayed it might help his behavior.  It helped a little but once again had to take stock, steel ourselves and figure out what else might be going on. We still wondered if there were some residual anger related to his adoption and so arranged for him to go to and stay at a treatment facility in Colorado hoping that they could tease out more of his true challenges. In the meantime, (because we always try to be two steps ahead) we also ordered a Cunningham Panel, (Moleculera Labs – AN AUTOIMMUNE NEUROBIOLOGY COMPANY) but those results were put aside while we focused on Colorado.

We headed out west in the summer after speaking extensively with the facility he would go to. We were confident that if anyone could tell us if this was an attachment disorder, it would be here.  Less than a week into their program, we were called into the office and given their professional opinion, we were not dealing with RAD. Perhaps an anxious attachment scenario but not true RAD. We were told to take him home and pursue the bipolar angle more thoroughly. We were still very confused but at least going to Colorado helped us gain some clarity in our situation and we left there feeling confident that the attachment part could be put to rest. I will be forever grateful for the work The Institute for Attachment does, especially for the foster and adoption community which we are still very much a part of, but that was not where our personal resolution was to be found.

We returned home with the intention to do the bipolar work up. Take the meds, accept the diagnosis and move on but all the time my mind was fixated on the Cunningham Panel results. Two of the test results had been at the really high end of normal, or the really low end of abnormal, but that told us something didn’t it?  We met with our long term integrative neurologist and explained what we learned in Colorado. This doctor then confirmed, that based on the Cunningham Panel, he now thought we were dealing with P.A.N.S. or P.A.N.D.A.S. (along with mitochondrial disorder).  There were no positive (ASO) strep titers so it was a P.A.N.S. acronym for our diagnosis. As an aside, this latest diagnosis brought our list up to a whopping 16. Yes, 16 – we had so many diagnoses, there was barely room on an 8.5 x 11 sheet of paper. Along the way we have been classified as: (in this order) PDD-NOS, Autism, sensory processing disorder, ADHD, bipolar 1 rule out, depression, mood disorder NOS, anxiety, borderline personality traits emerging, auditory processing disorder, epilepsy (temporal lobe complex partial seizures), tourette syndrome, ODD, OCD and developmental trauma disorder. Now we were being told it was an postinfectious autoimmune encephalitis. We actually didn’t understand that this is what P.A.N.S. meant at the time but of everything we had heard up to this point, the P.A.N.S. diagnosis actually made sense. We left that appointment still not really knowing what to do or what the treatment plan needed to be but we were one step closer to being on track.

We had the diagnosis but now needed a plan of action:

Neither of us knew what we should do next. My husband and I just kept saying, what do we do with this new information? Thankfully by this time, B was recovered from the tonsillectomy he had in 2015 and his behavior and outbursts had continued to improve. He had more control and had actually been able to return to school. Cautiously, he had started back in 7th grade after being out of the public school district for over 2 years and he settled right back in. As he returned to school, we were still considering what all these behaviors could best be explained by. We relooked at that Cunningham Panel, thought seriously about the P.A.N.S. presentation and considered the mitochondrial disorder. I spent many days and nights researching P.A.N.S. and everything I read just kept confirming our situation.

We decided we would find the best P.A.N.S. doctor we could, and make an appointment. We of course waited an extraordinary amount of time as is always the case for any doctor in our world, but finally the time came and we took ourselves off to Washington DC.

We got to DC in September of 2016 (remember this is 12 years after this journey began) and she quickly and easily confirmed the P.A.N.S./P.A.N.D.A.S. diagnosis. Citing the periodic limb movement disorder as a big clue, the constant strep, ear infections, mycoplasma pneumonia bouts (3), coxsackievirus x 3, scarlet fever, asthma, allergies, sleep disorders, high liver tests, low iron, low vitamin D, the list went on and on. We had all the markers and behaviors for P.A.N.S. We thought HALLELUJAH Our child has a chronic autoimmune disorder. Not something typically celebrated but we were really celebrating finding a doctor who validated that there was something medically wrong and this “something” actually made sense. Both our children were diagnosed with P.A.N.S. that day.

Pediatric Acute Onset Neuropsychiatric Syndrome (P.A.N.S. – the MacDaddy of P.A.N.D.A.S.). My daughter’s strep, OCD, separation anxiety, thyroid challenges, ANA tests, rheumatoid symptoms all added up to the same issues her brother was having. Different, less violent presentation but all adding up to the same thing. We had officially confirmed that additional diagnosis on our list… not only had we reached that 16th diagnosis, we had now gotten it confirmed TWICE. We thought surely there is a prize for this, but turns out it’s just a large doctor bill, a prescription for antibiotics and a request to return in 6 weeks.

In true us fashion, the first antibiotic was short lived (we are allergic to everything), a rash developed quickly and so we moved to a different antibiotic. Six weeks later we went back to the clinic, agreements still of a diagnosis of P.A.N.S. and discussion of IVIG. IVIG (intravenous immunoglobulin) being the gold standard treatment for children with P.A.N.S./P.A.N.D.A.S. We felt like the nightmare finally had an ending. However, this doctor was out of state and therefore out of network and it turned out the IVIG was going to be around $18,000 per child, and we had two children who needed it. Additionally, this wouldn’t be a one time deal, this could mean multiple infusions of IVIG to get them back to homeostasis. It just wasn’t happening. Our fortune was long ago spent on the plethora of doctors we had already seen.  To get to DC we had cashed out the last of our life insurance policies, the well was to dry to even contemplate picking one child for IVIG, not that we could but even that wasn’t an option. We returned home a little deflated but with another prescription and an instruction to return again in 6 weeks. Six weeks later we are back at the office. It began as a typical appointment like every other; however, during our discussion, somehow we ended up cycling back around to the idea that this may possibly be bipolar. We were momentarily thrown into confusion. The antibiotics were working, slowly yes but the symptoms were alleviating, the tonsillectomy had proved wildly positive over the long term, school was going reasonably well and his rages had decreased by at least 50% but here we were, back entertaining the idea of him being bipolar 1. My husband and I were a little dumbstruck but the doctor went on to explain that after all the testing came back and with the history we provided, it was no longer certain that we were dealing with an autoimmune process and she didn’t want to miss a diagnosis of bipolar. Honestly, we did understand. We get it, doctors are in a precarious position, when they are right we admire, respect and adore them, if they are wrong – we sue! I get it. Truthfully, I would never sue (ha – so many opportunities, so little time) but I can absolutely respect a doctor for covering all bases. Anyway, as we got ready to leave, we were told to stay on the antibiotics and return in 6 months. SIX MONTHS. My still suicidal, self harming, fast becoming anorexic child, plus my other one who we now knew was equally as sick, had to go home and do nothing but one antibiotic for 6 months. We felt like we were being dismissed and the idea of waiting for 6 months, while doing nothing, was just not an option. My mind had already been kicked into gear (remember 2 steps ahead), as part of the testing this doctor had done lyme testing. We had noticed that the Western Blot returned with a couple of positive bands, not enough to be called positive by the CDC but it made us curious enough to explore further.

Because of that testing, I had ordered a DNA Connexions kit – it was easy and could be done at home.  The results had come back right before we had left for our trip. Both kids had burgdorferi DNA in their urine samples. “Borrelia burgdorferi is a bacterial species of the spirochete class of the genus Borrelia. B. burgdorferi exists in North America and Europe and is the predominant causative agent of Lyme disease in the United States.”  [wikipedia]. We had asked the DC physician about this during our visit but they don’t treat lyme so they were not super informed about the impact this might have on our children. We had also asked about the mechanism of amantadine as we had seen huge growth in our son with this antiviral after the tonsillectomy and adenoidectomy but the doctor had no basis to enlighten us further on why this might be. Basically, we were still grasping at straws and clinging to hope that it was still an infectious process and not bipolar, but really we left that doctor’s office in dismay. The cavalry felt like they had galloped right on by. After I had a good cry in our hotel room, we headed home and settled back into a routine, I posted online in a P.A.N.S. group about our disappointing outcome from that last appointment (Facebook is truly alive with parents in our situation) and someone private messaged me about a lyme doctor in New York. She was supposedly the best. Cared about her patients, ran thorough testing, was respectful and responsive and above all, really smart about lyme.

If you have followed along this far, you already know what happened next. We got to New York in February 2017, the doctor took one look at the Western Blot, examined the children, took a very detailed history, did a bunch of neurological testing and voila, we pretty much had our answer – LYME! Well, after IGeneX and Galaxy testing we had confirmed lyme but really, we left the doctor’s office that day with answers. Answers that had taken 12 years to find. How in the world, when this testing is so easily available did it take us 12 years to get here? We were back to a P.A.N.S. (triggered by lyme) diagnosis, we happily erased the bipolar once again from our minds and formulated a plan to treat the lyme and get our kids well again.

Anyway, fast forward several more months, we are still wading through blood draws (we needed 33 different tests), sleep studies, MRIs, and EEGs, some of these had been done but much of it never had. My kids are sick, really, really sick. The NY Doc started the kids on a combination of clarithromycin and doxycycline and we have just been continuing to make slow steady progress.  We are supposed to add a drug called Mepron but the side effects scare me and for giggles, we have just picked up a prescription for low dose naltrexone.

This is our life right now, antibiotics, immune stabilizers, nasty antiparasitics. I won’t even begin to mention the mold testing and clean up, yes, that happened…

But what do I say  about the treatment for lyme? I say surely there has to be better way, a gentler way. So in the spirit of always being me and knowing the summer holidays are stretching lazily out in front of us, I look to fill 10 empty weeks with no plans and no desire to do anything and  I start to research more about lyme. Late one night in a popular facebook group, I stumbled across someone who is in the midst of treatment for her chronic lyme, at a clinic in Andover , MA. This looks interesting I thought to myself, a no drug therapy to resolve lyme and it only takes 12 weeks. SIGN ME UP! Seriously, only 12 weeks – not 12 years – 12 weeks!. Soon phone calls were being made, plans were laid out, appointments were rescheduled and blogs are now being updated. In 7 short hours we hit the road headed for Andover MA.

Of course, the phone calls were made last week, I don’t move that fast. To convince the children to buy in, I ran away from home. Seriously, I came home and told them there was a program in MA that could end this nightmare for all of us and they shockingly balked at my suggestion of spending the summer doing one last treatment. Weeping and wailing ensued (mostly from me) and I left the house declaring dramatically, I wasn’t coming back if they wouldn’t go. In reality the minute I left we were exchanging texts and apologising profusely to each other but to make a point I wandered around Southern States buying my chickens their treats veeerrrrry slowly. I finally returned home and the kids declared grudgingly they were onboard, and that’s when we started to plan this epic trip of all trips. As of Monday morning 8.30 am we will be at the new clinic hoping and praying that this TRULY FINALLY IS THE ANSWER we have been looking for. Ever the optimist, I believe it is 😀

My reason for updating the blog today is so that I can chronicle our trip to MA, talk about the therapy and hopefully declare the positive results we are getting as the weeks go by. We plan on being in MA for the duration of the program which is 12 weeks. We are towing our little 17′ Jayco swift and that’s what we shall be living in for the duration. I found a campground that is willing to rent us a monthly space for $900 which we can just about swing, the clinic is very reasonable for a 12 week program in our world, so, bon voyage our little corner of the world, tomorrow a 13 hour and 17 minute drive to MA so we can report to the clinic Monday morning at 830 am sharp. Check back for updates.