Our Story

In March of 2016, we had never heard the term PANDAS. Just three years later we know more about it than ever (and are still learning daily) and are happy to report to you as a means of hope, that it is possible to get your child back to baseline (where he/she was before PANDAS afflicted him/her). When telling our story, I often choose “we” over “he” (my son), because although it afflicted our son directly, the entire family’s world is turned upside down; if you are new to this disorder’s affects, you’ll too soon learn that your whole family is suffering from PANDAS (click here for a moving piece written by a dad of a PANDAS family). I use the term PANDAS throughout my site, because (at least for our son Hudson’s first undeniable flare*), it was Strep that started our trek through this hellish disorder; however, anyone dealing with PANS (or here to learn about PANS), can read on. In terms of how it troubles the child, what the treatment options are, etc., it’s essentially one in the same. If you aren’t aware just yet of what PANDAS and/or PANS even are, start here for a run down on these acronyms. As of my most recent research (updating this August 2019), I’m reading about it being called Autoimmune Encephalitis (AE) more and more, and I have to say, I agree with this term the most. This name seems to best describe your child’s disorder to people outside your immediate family (because most everyone is familiar with the idea that an autoimmune disorder of any kind is the body attacking itself, and people know that encephalitis, inflammation of the brain, is very scary—so the term Autoimmune Encephalitis quickly denotes the seriousness of what your child is dealing with), and it also seems to help families make more headway with doctors and more notably, insurance companies (if you are new to PANDAS/PANS, you’ll unfortunately realize that insurance companies are too often not cooperative or helpful with providing coverage for treatment options). That being said, my son and our closest friends and family know of our journey as that through “PANDAS”, so it is the term with which we stick. If you choose to call yours Autoimmune Encephalitis (AE), I encourage you to explain it is also known as PANDAS/PANS, merely as a way of raising awareness. We don’t want to lose what little ground we’ve made in the PANDAS world by suddenly renaming it AE, although that does seem a more fitting title.

*Each time a child’s PANDAS/PANS/AE symptoms present themselves, it is referred to as a “flare.” What I call Hudson’s first undeniable flare was, in hindsight, not our introduction to PANDAS. Your child’s “first” PANDAS flare is likely not really their first. If you think back, you may recall periods of time where your child behaved oddly/differently/had sudden and/or extreme anxiety…you may or may not be able to associate this behavior with an illness (keep in mind the symptoms can arise months after an illness, and a good majority of kids with PANDAS don’t present typical symptoms of sickness anyway, making it tricky to always make that association). These first few flares can go unnoticed (especially in very young children whose personalities are still forming and behavior and moods can be somewhat erratic by nature), are less severe, and may go away on their own with time. Each subsequent flare, however, can get progressively worse presenting with more severe and noticeable symptoms and lasting longer. I call his flare of March 2016 his first undeniable flare because there was no doubt something serious was ailing our son. But in hindsight, PANDAS may have afflicted him on at least two other occasions. Two years prior he went through a three week period of severe anxiety of cars, for no logical reason. He didn’t want to leave home, not even to go places he loved. He was overcome with anxiety on a planned trip to a nearby waterpark resort for a weekend. Just as we had planned to seek help upon returning home from this trip he didn’t enjoy, his anxiety subsided just as abruptly as it had come on. Two years before this incident, at the age of four, he suddenly had urinary issues. He felt the urge to pee all throughout the day, and while he didn’t wet his pants, he would actually urinate on each visit to the restroom, sometimes 20 times a day. It had become disruptive of our usual routines and he was extremely frustrated by his constant need to urinate. Naturally, with no other symptoms we were keen to, we took him to a urologist who explained he had a smaller than usual urethral opening and would require a quick surgery to expand, allowing more urine to flow each visit to the restroom. We didn’t know any different, so we agreed to the surgery and his urinary issues did subside, but I cannot help but wonder now if that was not actually a PANDAS flare that naturally subsided on its own with time. Increased urinary frequency and urinary issues are not only on the list of possible symptoms, but a symptom our son in particular has dealt with during each flare since our learning of PANDAS in 2016.

I am here to raise awareness and share tips, reminders, and natural remedies that supplement the doctors’ treatments. I point out recent research and often old research that I’m just coming across that I feel may be a piece to even one child’s puzzle. If I can, I spread the names of helpful doctors I learn of through our own journey and interactions with other parents.

Over the past 3 years, I’ve been personally connected to over 40 moms who have heard of our story and my desire to shorten their PANDAS story by way of giving them as much of the info I’ve accumulated over three years as possible; so, in an effort to get this info to all PANDAS parents as quickly as possible, and update info as I learn more, I wanted to create this website: to provide information and guidelines and even better, a sense of empowerment and hope. I know our scariest days were before we heard of PANDAS–when we had no name for what had changed our child from the morning of March 27, 2016 to the evening. Once we heard of the term PANDAS, we dove in. On this site, you’ll discover everything we learned then and have accumulated since. Most everything I’ve learned has been from other sites, articles, videos, books, etc., so what I believe to be the most helpful thing about my site isn’t my own knowledge, but the convenience of all the links I’ll provide straight to the places I acquired the knowledge myself. I know you’re overwhelmed. I know you’re running on empty. I know your brain is scattered and your capacity to absorb something foreign seems nil, but I am here to make this as easy as possible for you. I’ll likely never meet you in person, but I will be praying for you and your child and my ability to help you.

To jump to a happy ending for you all who need a glimpse of hope right now (Lord, don’t I remember)– our son has been able to recover completely from his first flare of March 2016, second flare of August 2017, and his third pro-longed flare of Jan 2019. I’ll get into each flare below, but a summary: we ordered the Cunningham Panel 4 times and received IVIG treatment 4 times (his Jan 2019 flare didn’t subside completely with just one dose of IVIG as the other two had, so we opted to receive a second dose of IVIG in May of 2019). As of August 2019, he is 11 1/2 and in addition to his past IVIG treatments, we’ve implemented diet changes to heal his gut. In short, we give him probiotic every day, make sure he gets lots of sunscreen-free sunshine and have removed all gluten from his diet and sugar is a very rare and small incidence. For a more in depth look at what supplements and vitamins we give him, click here. We are hopeful that with these measures, combined with his age, we’ll never have to experience a flare again.

The Cunningham Panel (CP) is a blood test that helps identify the level of autoimmune antibodies associated with neuropsychiatric disorders occurring in the child’s brain. Elevated levels of these antibodies indicate that a child’s symptoms may be due to an infection-induced autoimmune response. We believe the Cunningham Panel assists families in receiving quicker and proper treatment (doctors prefer concrete tests over frantic parent reports) and helps families fight for insurance coverage on aggressive treatment options, such as IVIG. For our family, we like seeing black and white results of what is taking place in our child’s brain so we have a marker to go off of (the Cunningham Panel results are extremely easy to read and also help the child to understand that something very substantial is occurring in their brain causing these scary changes in them–and to realize that they are not to blame), and our CP results helped to have our second and third rounds of IVIG covered by insurance.

Our Experience in Greater Detail (with helpful links throughout):

First (undeniable) Flare: March 2016 (Hudson’s age: 8)

To quickly describe our son: he has always been an easy child. Great eater. Easy to potty train. Eager to learn from a young age (to the point it encouraged me to choose homeschooling, a decision we’ve stuck with all these years). We’ve always called him our “rule follower” because he is an incredibly responsible, mature and compassionate person that always wants to do what is right and be helpful and thoughtful in every situation. He is confident, athletic and is frequently complimented on his mature social skills. He is inventive beyond belief, loves nature and creative challenges. His favorite hobbies are fishing, golfing and basketball. He is just awesome.

On Sunday, March 27^th, 2016 he changed in front of our eyes. He was a different person that evening than he was that morning. I vividly recall looking at my husband and reporting with concern “something is up with Hudson.” When the oddities, intense questions and uncharacteristic behavior continued and worsened severely over the next 3 days, we had no idea what to do other than to visit a Psychiatrist, a field of medicine neither of us had any experience with. Our son’s symptoms to report at this point: he was pacing and had a strange gait to his walk. He was having extremely intrusive thoughts, was wildly disturbed by his inability to stop thinking them and felt the need to shout them out to us. He was obsessed with seeking reassurance that he wasn’t crazy and that we still loved him despite what he called his “bad thoughts”. He suddenly had a tic of constantly poking at the inner corners of his eyes. He couldn’t focus during school (luckily, we were already a homeschooling family), was overwhelmed by the simplest of tasks, like choosing what to wear for the day, and had no desire to play, create, or engage with even his sister or dogs. He couldn’t fall asleep without being in between my husband and I and had to pee constantly. He wouldn’t eat because he felt he “didn’t deserve to eat”, especially any of his favorite treats. The psychiatrist thought he had extreme anxiety and some OCD and she prescribed anti-depressants and anti-anxiety drugs. We left her office thinking “What?! What! He didn’t have a single one of these symptoms 4 days ago. 4 DAYS AGO! And now he is on psychotropic drugs for them?” It didn’t make any sense. But the doctor was very kind, listened well and even after asking to talk to Hudson alone didn’t think anything strange was going on. I agreed that hearing his symptoms he did sound like an extremely anxious child suffering from OCD, but why now? Why all of a sudden? Nothing in our life had changed—happy marriage, no deaths or trauma, we hadn’t moved, etc. Of course, your mind races and while I did have the reassurance that because I homeschool he is literally with me at all times, my husband and I still wondered if something could have happened to him or in front of him that we were missing. We asked him point blank if there was anything he needed or wanted to tell us—had anything scary or inappropriate or strange happened? Did he see or hear something that worried him? His answer shook me: “No! I wish something terrible had happened to me because than I would have a reason for feeling this way and acting like this! Nothing happened, I just became like this!” The meds the psychiatrist prescribed only made matters worse. They are referred to as SSRIs (selective serotonin reuptake inhibitors- meant to increase levels of serotonin in the brain), and you’ll often hear of these being prescribed to children with PANDAS/PANS because the symptoms do present themselves in such a way that doctors too often think it is a mental issue (and if the parents aren’t aware of PANDAS, they may think that the doctor is right at this point). The big difference is that the symptoms come on so abruptly*. Mental illness is a real thing, but it does not come on over night. And even if your child’s symptoms do not come on abruptly the way our son’s did, you know your child, and if these mental health symptoms wax and wane or seem to be associated with certain things, like exposure to an illness, don’t succumb to a doctor’s initial diagnosis of mental disorder just because he/she is a doctor. Doctors are only human. Sure, they can be smart, extremely helpful and most are to be respected, but do not deny your own instincts and knowledge just because they carry the title “doctor”; again, they are only human—don’t let them do all the thinking for you. You know your child. Anti-anxiety meds might have a place in a child’s overall treatment plan, but for us, they made our son’s symptoms far more severe and his issue was not mental, I just knew in my gut it wasn’t, so I knew I needed to get him off of them. (*Note: there are PANDAS/PANS stories where the symptoms didn’t present as abruptly — our son’s symptoms do, but this is not always the case. Even if you noticed symptoms more gradually, don’t rule out PANDAS/PANS). 

Several times during this first week, we’d take our younger daughter to my mother-in-law’s to get her out of ear shot of her brother’s meltdowns and outbursts of scary thoughts. At this point, she was the only one who knew what we were going through and she only knew of the few symptoms we’d quickly spout off as we were frantically running back out the door to console Hudson. About six days in, she texted me “this will sound out there, but has Hudson had strep recently?” We were at his favorite restaurant when this text came in, trying to persuade him to play with his sister on the playscape, an activity that was always so natural and fun for him. But today, he wouldn’t play, and he wouldn’t eat—making it depressing and extremely hard for my husband and I to talk about what all was going on. When I received this text, I answered “yes—back in December, 3 months ago, why?” to which she responded “look up PANDAS.” I requested the check for our uneaten meal; I couldn’t get home quick enough to dive into whatever it was Sarah had found online that she thought warranted our attention. Once home, Hudson curled up in a ball screaming “I want to die! I just want to die!” Exhausted, scared and sick to my stomach, I laid next to him until he and I both fell asleep. My husband woke me up at 5am to tell me he had been up all night reading about PANDAS. I’ll never forget him whispering in the dark so as not to wake Hudson, the light from the bathroom revealing the extreme worry on his brow, and the many emotions his news evoked in me: fear of the unknown, relief for a term explaining these changes, desire to learn more and simultaneous trepidation that I couldn’t possibly surmount the learning curve that would be required for me to grasp something so brand new and yet so important to understand for the sake of my child. I jumped on the computer, and scanning the list of PANDAS symptoms, I could have checked off every single one except for rage.  

We took this newfound info to our pediatrician and told her about the past week. She had heard of PANDAS, she admitted, but never treated it and actually seemed annoyed we brought it up. First red flag. A doctor that doesn’t appreciate you doing your own research is not a doctor worth wasting your time, energy or money on. In short, she begrudgingly agreed to test for strep throat and when it came back negative said “if it isn’t strep, it isn’t PANDAS.” Second red flag. When I told her more about what was going on and even showed her some pages where Hudson had drawn pictures of what he felt was happening inside his brain, she left the room and returned with a business card to Laurel Ridge, a local mental institution, and suggested we take him straight there. She was done with us. I was livid. And heartbroken (we had come here for years, she knew our history of visiting for well checks and small health issues only and now this—didn’t this warrant some empathy and research on her behalf?!). But ultimately, I was just pissed off and determined to not waste time. I researched for days (cringing inside each time I gave Hudson the drugs I knew weren’t what he needed and then having to end each day giving him a melatonin just to get him to sleep) and returned to her with more evidence–showing her that strep can also be present in the sinuses or genitals (she only swabbed his throat–click here to read the transcript of an amazing podcast where this doctor says that the evidence of strep she finds in most of her PANDAS patients is actually found perianal) and questioning the possibility of it showing up as a false negative. I also told her that I had learned that illnesses other than strep can cause these symptoms (as I heard her cold, curt response from earlier that week replay in my head “if it isn’t strep, it isn’t PANDAS.” She didn’t bother to expand on that by explaining that if something besides strep causes these symptoms, it’s called PANS, in which the S stands for syndrome instead of strep. She probably didn’t know because she was clearly not interested in learning anything more about this disorder. I was done trying to crack into her close-minded skull, I was really just there to request a referral to a local Immunologist (Dr. Anthony Infante) that I had read online sees PANDAS patients. She would not give us a referral because she did not agree this was PANDAS (I cannot stand when a prideful doctor will not give a referral to another doctor, hindering your child’s return path to health!) and again, was annoyed by me. We essentially fired her. She was ignorant and lacked compassion. Here is a flyer I wrote for doctors in response to our experience with her. I encourage you to take it to your doctor or give to any pediatrician you know to open their eyes to the importance of hearing a parent out!

We then found a doctor in Plano that was able to see us within a few days without a referral. Dr. Rao (same name as the local psychiatrist we started with, but mere coincidence) was extremely knowledgeable and not only spent a long while explaining PANDAS to us, but his office is also where we read the children’s book “In a Pickle Over PANDAS” which did the best job thus far explaining it to our son, and most importantly: Dr. Rao taught us about and ordered the Cunningham Panel. I must disclose that his website (focusing on allergies and asthma), physical building and staff do not do justice to his PANDAS knowledge and from an administrative standpoint, they can be beyond frustrating to deal with. But, to this day he remains the doctor we actually learned the most from and he is the doctor that sent us home with the actual diagnosis of PANDAS. He is able to draw the blood/send away/order the Cunningham Panel test directly from his office, many doctors are not. I will advise, if you take this route, to call Moleculera Labs (that runs the test) on your own to see when your results are in, rather than waiting for Rao’s office to alert you. They are not the most organized and we found out our results had been in days before they let us know.

During our visit with Dr. Rao, he educated us on the fact that vaccines, mold exposure, Lyme disease, mycoplasma, severe allergies and many other things could have caused Hudson’s PANDAS flare. We had our home tested for mold (and it came back fine) and he tested negative for everything else. While we waited for the Cunningham Panel test results (which at the time was approximately 6 weeks), he had us give our son what he referred to as his “PANDAS Pack”, it was high doses of Vitamin C, NAC, and Tumeric with Black Pepper (important for absorption rates). He also suggests Claritin, Benedryl and Ibuprofen for their anti-inflammatory abilities. He said these supplements help 75% of his patients see a relief in symptoms because they decrease the inflammation in the brain. (*There are parent reports out there that only the Aleve brand Ibuprofen helps their child and other brands make things worse, which is likely due to a filler in the other brands that isn’t in Aleve).

We had tapered off the SSRIs that the psychiatrist had prescribed and thankfully so, because we were now receiving the confirmation that this was not a mental issue but rather a neuro-psychiatric reaction to infection. This meant we needed to treat the infection and not just mask the symptoms. Eradicate infection, reduce inflammation, reboot immune system. These are the three steps to overcoming a PANDAS/PANS flare. Dr. Rao’s “PANDAS Pack” was meant to reduce the inflammation while we waited for the Cunningham Panel results. He didn’t feel comfortable prescribing an antibiotic until he saw those results, as he felt seeing them would help him determine which antibiotic to prescribe.

When we returned home, we started these natural supplements and returned to the psychiatrist to ask her if she’d heard of PANDAS; she immediately valued the seriousness of what we were dealing with and that this was different from a general anxiety/typical OCD case. She referred us to a PANDAS knowledgeable therapist and agreed with our choice to take Hudson off the meds she had previously prescribed. I didn’t realize at the time how lucky we were to receive her empathy and how easy she made it for us. To this day, while we only had 2 short visits with her, she remains one of the doctors that I most respect.

So Hudson began seeing this therapist she recommended, because while we knew Hudson’s symptoms were NOT mental-illness-related, his OCD was extremely scary, intrusive thoughts (the obsession) and the need to shout, write or draw them out incessantly (the compulsion) –these were terrifying him and causing him to be a sobbing, depressed mess all day every day, so we appreciated that he needed intense therapy to help him work through this (and us work through it–it was terrifying to watch my adorable, sweet child draw out the intensely scary thoughts plaguing his mind). Jay Jeter is in New Braunfels and is an OCD specialist who understands the difference between typical OCD, and OCD associated with PANDAS.

**During our son’s 3rd flare (Jan 2019), the intrusive thoughts haunted Hudson once again; he wrote a book about how it feels to be a normal kid who suddenly has these scary, bad thoughts and the process of seeing doctors/getting IVIG, etc. He wrote it for other kids, especially those that suffer from the bad thoughts, so they know they are not alone. Click here to read a pdf of his book, or email us your address at survivingpandas@gmail.com if you’d like to request a free hard copy for your kid to flip through whenever they’d like! It’s just typed and bound with his drawn, colorful pictures. 🙂

So, he was taking these natural supplements and attending 4 hours of therapy every morning. We’d spend the afternoons outdoors (although he wouldn’t play or interact at all). We have always homeschooled, so that was just put on hold. See here for another flyer I created for parents with PANDAS/PANS children to give to their child’s teacher. I couldn’t fathom how these parents managed to keep their children in school, a struggle I did not have to work through and felt for those that did.

We had read about strep being “harbored” in the tonsils of some children and therefore showing up as a false negative on strep tests. Four months prior to this March 2016 PANDAS flare, we took him to the doctor because of a rash that ended up being Scarlet Fever associated with a bad Strep infection. We had no idea he was suffering from strep throat and have since learned this is common in kids with PANDAS–not showing symptoms typical to an illness or infection (doctors call this being Sub Clinical). It is also not uncommon for PANDAS symptoms to show up months after an infection like this. It’s due to molecular mimicry: the infection tries to disguise itself as normal human cells to avoid being detected by the immune system, and it works for some time–eventually, however, the immune system realizes this, but is confused, so also starts to attack the healthy cells in the brain. Hence the delayed, and misdirected, reaction.

Well, his tonsils had never returned to normal size, so through visits with our ENT, we had already decided (prior to this flare or having heard anything about PANDAS) to have his tonsils removed that summer (2016). But, when we learned of tonsillectomy giving some PANDAS children relief from their symptoms, we decided to move this up and scheduled it for May 1st, 2016.

As of mid-April 2016, we were still waiting on Cunningham Panel results, taking Dr. Rao’s PANDAS Pack of vitamins and attending therapy, when his symptoms got so severe, I was scared for the health of his brain and wanted to see a neurologist to rule out anything else. We got an appointment with Dr. Sidney Atkinson. At this point, I wasn’t hopeful that he would know about PANDAS, so imagine the elation when we learned that Dr. Atkinson not only knew about PANDAS, but had also studied for a short time alongside Dr. Cunningham of the Cunningham Panel (CP). After showing him past and recent videos and pictures of our son and Hudson’s personal journal entries, he was certain, even without waiting for our son’s CP results, that this was PANDAS (although he did also perform a spinal tap and MRI to definitively rule out anything else). He posed the question “is there any reason you cannot stay and be admitted for IVIG treatment?” That single question changed the trajectory of our PANDAS journey. I had done enough research about IVIG to know that it is extremely costly ($10,000-$25,000 each time, depending on child’s weight and therefore required dose), and that it can be extremely difficult to have insurance cover it. I was floored. On one hand, I was full of joy that we finally had a plan of action… a potential solution rather than being sent home with more questions! However, I realized that his question was the polite version of “can you afford this?” and my heart ached for the families who would have had to answer that same question with a resounding “no—we cannot afford it.” It was no chump change for us, to be sure, but we could make it happen. It is not uncommon for families to be in dire straits financially at this point in the game—all the lost wages from missed work to care for the child, all the doctor visits and jumping from drug to drug, all the blood tests, all the therapy, activities to attempt to distract the child, paying to have your home tested for mold, and constant eating out. Some parents even lose their jobs when the workplace doesn’t understand the severity and suddenness of their child’s situation that is forcing the mom or dad to miss so much work. In fact, my husband made a call into the owner of his company to apologize for all the work he was missing and to explain why, and that conversation is what led us to see this Neurologist at his suggestion. It was in that exact moment, just after giving Dr. Atkinson our go ahead to order IVIG, that I looked to my husband and said “when we make it to the other side of this, we have to help other people.”

Not only was Dr. Atkinson able to admit us for IVIG, but he wanted us to meet an Immunologist he worked closely with, Dr. Anthony Infante–the very doctor we originally wanted to see that our pediatrician wouldn’t give us a referral to! We were making progress and so relieved!

I’m so thankful that I had read enough about PANDAS and IVIG as an option that I was well aware that, while IVIG is a treatment used for many things, when utilized to treat PANDAS it needs to be administered very specifically. If this is a treatment option you find yourself considering for your child, you need to know that it needs to be administered with the specific PANDAS protocol (over a 2 consecutive-day period) to be effective at treating PANDAS symptoms. Administering it otherwise (for example, part of the dose one day and going back a week later for the remainder of the dose) can, and often has made things worse for many PANDAS kiddos. Doing it that way essentially stirs things up–the opposite of what an overactive immune system needs or can handle. Giving a 2 consecutive- day HIGH DOSE (versus lots of low doses) floods the system with healthy antibodies, essentially telling the child’s mutated/hyperactive antibodies they are “fired” and no longer needed or welcome, getting them out of there. 2 consecutive-day High Dose. Fight for it. Your doctor may simply not realize, as IVIG is beneficial for several things, not just PANDAS, and often it’s fine to administer it in partial doses. NOT for PANDAS. Google it. There are studies to back you up.

Take screen shots of articles and keep these and all pics and videos of your child during his/her PANDAS flare in a separate folder on your phone, so you can pull these up quickly and show the doctors you are not a frantic/irrational mom, but rather a level-headed person whose done your research and are there to ensure your child receives the best and most ideal care. They will eventually stand down. You must also pay attention to the dosage. The PANDAS protocol calls for 2grams of IVIG per kg of your child’s weight. They’ll take your child’s weight when you get admitted to the hospital or visit a doctor. Document this. You can use google to convert pounds to kg. Whatever your child’s kg weight is, they should receive double that in grams of IVIG. I mention all this to arm you with this info and remind you to NOT assume the doctors and nurses administering the IVIG will know. For example, for our son’s second flare, they wanted us to split the 2 IVIG doses into 2 weeks–I REFUSED, stating article after article that shows this is not only not effective but could cause more harm than good for the child with PANDAS. For our third flare of January 2019, they agreed to the 2 day dose, but their math was wrong and they were not going to give him enough grams. Again, I pulled up reports and also pictures of his previous IVIG bags showing the grams he received in the past compared to the weight he was at the time (which I was able to prove by simply looking at his patient portal records from his pediatrician). Take pictures of these bags! At one point they told me a bag won’t hold more than 40 grams and I immediately pulled up a picture where his previous bag held 42 grams, labeled right there on the bag. **Important note: If your child tests positive for LYME, do your own research regarding IVIG, as in some LYME cases, IVIG can be contraindicated for a child also dealing with Lyme. Meaning, for that particular case, IVIG may NOT be helpful! There are facebook groups out there that specialize in PANDAS children also dealing with Lyme. Start there for info/support. Click here for some tips on how to remain organized through all this to help with arguments like those described above.

Back to his first IVIG 2016: Hudson had a spinal tap and brain MRI to rule out anything else, and then started a 2-day dose of IVIG the next day. He had the expected side effects of intense headaches and nausea (there are ways to help alleviate these, so do your research–for starters, make sure your child is very well hydrated the days prior and day of IVIG), and we were sent home on a Friday. His tonsillectomy was on Monday morning. I asked the ENT to culture his tonsils (rather than just dispose of them as they usually would), because I suspected we’d find harbored strep (up to this point, we still had no known trigger for his PANDAS, but he had every single symptom of PANDAS aside from rage). What we found shocked us: he had a bad staph infection growing inside his tonsils–likely for the 4 months since his case of strep! The day we returned from his surgery, his CP results finally came in. We never did return to Dr. Rao who had ordered the CP and was awaiting the results before prescribing an antibiotic; it was while we were waiting for the results that we had found this local Neurologist and Immunologist who felt our son’s case was so severe and so certainly PANDAS that they set him up for this IVIG, so we turned our son’s care over to them. His Cunningham Panel results revealed that his levels were extremely elevated in 3 of the 5 test categories (if you are elevated in even 1, it is said you are likely dealing with PANDAS). So, my gut was right and thank God I fired the doctor that wanted me to send him to a mental institution! (click here to read about documentary: My Kid is Not Crazy or even better, watch it on Amazon Prime!)

The next few months were tough. We had done all we could, given him the treatment he needed and even had his tonsils/staph infection removed. Now we just had to wait. And wait. And wait. There are some rare instances where IVIG makes the PANDAS symptoms subside as quickly as they appeared, but that was certainly not the case for us. It was 8 weeks before we saw any improvement at all and it was very little. It was 12 weeks before we started to feel like for the most part, he was behaving like himself. His worst symptoms, the intrusive thoughts and restricted eating, had fallen off, but there was tons of anxiety lingering and he just wasn’t his carefree self at all. Finally, about 14 weeks after IVIG, he started behaving like his old self and was even reporting that he felt 99.99% better!

We had made it through. We were so thankful and had a new perspective on life for sure. We started meeting more and more PANDAS parents and more often than not heard stories where it took families years to determine it was PANDAS they were dealing with and then months and months to fight for treatment. We realized that our journey, while it felt like years when we were in the depths of despair, was actually nothing compared to what most suffer through. We partnered with PANDAS Network and hosted a golf event to raise awareness and funds. We raised over $20,000 and determined this money would benefit the most children by helping to cover the cost of the Cunningham Panel. This test costs $975 so is cost prohibitive for many families. However, having these results make a doctor sit up and pay attention and they can also form a great argument to the insurance companies that they should cover treatments like IVIG that had eventually brought our son back to complete health.

We were proactive as best as we could be with his health because at this point we just didn’t know what it meant to have this immune disorder. Did it mean he was more susceptible to getting sick? Did it mean a definite flare when he did get sick? Could it be that we were done with PANDAS forever? We just didn’t know…

Second Flare: August 2017 (Hudson’s age: 9)

I mention above how quickly Hudson’s first flare showed up—for us, it made receiving the diagnosis a bit easier than some other families experience because it was so abrupt, or acute-onset. This flare was the same. We were living in a rental home after selling and waiting for our “forever home” to be completed.  We were still homeschooling (a decision we made years before PANDAS afflicted us and one we intend to always do). It was late August and that week we had spent a lot of time watching the news as Hurricane Harvey was expected to hit the coast and we had family with homes in Rockport, TX and Hudson’s Grandad lived in Port O’Connor, TX. I’ve already described Hudson as being extremely compassionate and always overly aware for his age—I mentioned to my husband that we needed to downplay the hurricane because I felt the concern Hudson had for his extended family was affecting him. It was a Friday in August and the light, joy and curiosity seemed to have left Hudson’s face. It was the first time since he’d recovered from his 2016 flare that a small part of me wondered if PANDAS was back. I told my husband I wanted to spend the weekend doing things Hudson loved to see if he’d perk up a bit. We took him fishing and golfing, his two most beloved hobbies. During golf, he was extremely tense and anxious. I turned to him on the golf cart and said “I feel like you aren’t yourself this weekend. Do you think your PANDAS is back?” and he instantly burst into tears. Confirmed. I assured him that this time would be different. We knew what we were up against, we knew to order the Cunningham Panel to confirm our suspicions, we knew the doctors to help us and we even knew the treatment he needed! We had knowledge in our corner! This didn’t appease him much, but I felt more empowered. I reached out to Moleculera Labs to ask if I needed to return to Dr. Rao in Plano to have another CP test ordered or if there was a local doctor they knew of that would run it. They explained that if our pediatrician would agree to order the test (they needed a doctor’s order), they could send us a CP kit. Then we would need to visit a specific type of lab that had the equipment and the know-how to run their type of test, and then go straight to a particular Fed Ex that had the capabilities of shipping a package with frozen ice to them in a timely manner for accurate testing. After Hudson recovered from his first flare, I visited another branch of our pediatrician’s office. It was obvious I’d never take him back to the pediatrician we’d grown up with that ignorantly suggested we put our son in a mental institution, and I didn’t even want the chance of running into her in the building. I also didn’t want to switch practices altogether if I didn’t need to, so luckily there was a new branch not far from us and I found a young male doctor that I thought Hudson might appreciate dealing with. I made an appointment with him once Hudson had recovered from his first flare strictly to pick his brain about PANDAS and gauge where he fell on the spectrum of how much stock he put into the diagnosis. This topic is one I could go on and on about—the idea that anyone out there “doesn’t believe in PANDAS” is maddening. The symptoms are so bizarrely specific and also completely unrelated to one another (urinary frequency, handwriting changes, restrictive eating, etc!) and kids all over the world are complaining of these exact same symptoms after a recent illness…. AND the treatments of antibiotics and IVIG are helping them return to normal. What is there to argue? I would never wish PANDAS on any kid, but I do wish more of the kids that suffered from it were children of doctors so knowledge and acceptance of this diagnosis would spread more quickly. (Again, here is a flyer I created in response to our first doctor’s lack of empathy.) When I asked him if he’d heard of PANDAS he started to explain it to me, so I interrupted him to clarify that I knew about PANDAS because Hudson was just recovering from it. I explained what another doctor in their practice had suggested and how we fought past that ignorance to have him receive IVIG and a tonsillectomy through a local Neurologist, Immunologist and ENT. I told him I simply needed a pediatrician who would comply if I came in and requested not only a strep rapid swab but also a culture (more accurate than the rapid swabs that are only 80% likely to pick up on a strep infection), even if my son wasn’t showing the typical symptoms. I explained that he didn’t show any of the typical symptoms with his bout of Strep in Dec 2015 that ultimately led to the staph infection that caused his PANDAS flare of March 2016 and I wanted to be on top of any infection so we could treat more quickly should we need to in the future. While I didn’t love his answer, I did appreciate his willingness to listen to me and his upfront honestly about his thoughts on the subject. In short, he said what a person thinks about PANDAS ultimately boils down to where he/she went to school, and he admitted that he attended a University that found the diagnosis controversial at best, noting the governments’ lack of funding for PANDAS to be a red flag to him! He had never heard of the Cunningham Panel, however, and agreed to read up on it and PANDAS more. This initial discussion with this new pediatrician was back in June of 2016. So, in August 2017 when Moleculera Labs (who runs the Cunningham Panel), said I needed a doctor’s order for them to send me a kit for the test, I thought “well, we’ll see how cooperative our new pediatrician is about this.” He still didn’t seem totally on board (again, so frustrating), but didn’t give me any grief about ordering the test. We received the test, followed the precise directions (you have to freeze the ice packs they send overnight and then put in them in Moleculera Lab’s Styrofoam cooler on the way to the lab so the lab technician can put the sample in between the ice packs right away), and had the bloodwork done and mailed off. We started back up on Dr. Rao’s PANDAS Pack of NAC, Turmeric and high doses of Vitamin C and waited for the results. This time, I had no knowledge of Hudson being ill recently. No known rash, fever, vomiting, etc. I only noted that he changed one Friday after a week of stressful talk/news reports of the pending hurricane. I started to wonder if stress or maybe allergies (he had been congested recently) could be to blame for this flare. Yep. Both have been reported by other PANDAS parents to cause a flare. We quickly got his CP results back this time, just 3 weeks versus the 6 it took in 2016 (turn around time depends on how many tests they have going at that time). We reached out to our Neurologist and Immunologist that work together on Hudson’s case and they agreed to set us up with IVIG again. This time around his symptoms were different. I was grateful for Hudson’s sake that his scary, intrusive thoughts hadn’t returned, but what did hit was equally odd and unlike him. He had zero expression on his face and would only talk when spoken to. If you knew my son, you’d understand that this alone was not his typical character. He wasn’t experiencing much emotions at all.

One day, we got great news that his good friend’s recent cancer scans had come back clean, news that usually would have elated Hudson. He reported with a stoic look, “I don’t feel happy, kids don’t experience the emotion of happy.” What?! Hudson was typically the definition of a happy kid. Heartbreaking. Equally tough to watch was the life altering inability to make any, and I mean any, decision. These were just some of the 100+ questions he’d pose to us each day during this flare: “which bathroom should I go in?” “Should I have a sip of water?” “Do my shirts get their feelings hurt when I don’t pick them to wear?” “Am I hungry?” “Do I love you?” It was nuts. My son was brilliant, creative, confident, carefree—he literally couldn’t make a move without asking us first and had seemingly lost touch with his own preferences. It was like he was shut off.

When the doctors got back to us to schedule the IVIG, they wanted us to come in on a Thursday and get half the dose and return the following Thursday to get the other half. While I so appreciated all they had done for Hudson and their willingness to order IVIG just on seeing his CP results and hearing our explanation of this flare’s symptoms, I adamantly refused this dosing regimen. I found articles online that reported that giving a PANDAS child IVIG in broken up doses often makes matters worse, not better. I highlighted the pertinent parts and sent them into their office. They finally got back to me and agreed to the 2 consecutive-day dose I demanded. Read here for PANDAS protocol for IVIG and here for my tips on how to remain calm, cool and organized to be the most efficient mom advocate you can for your PANDAS child. Since our last dose of IVIG in April of 2016, I had learned that being really hydrated can help with limiting the unpleasant side effects that can occur during dosing, namely severe headaches and nausea. We forced him to drink tons of water the days leading up to IVIG. He got through the first day fine, but did develop a fever and nausea during second day dose. As soon as he complained of discomfort, I paged nurses for meds to reduce pain and nausea. We completed IVIG and headed home for the waiting period. It’s very important that in the weeks and months following IVIG the child not be exposed to sickness, so we do our best to make hanging out at home fun and avoid restaurants/stores/etc and are super diligent about doing what we call “health checks” before meeting up with friends or family. Click here to read how I go about reaching out to people just before a scheduled meet up to ask if everyone is healthy.

While we never fully determined what triggered this flare, it was super interesting to me that he returned back to himself within 4 weeks this time, versus the 14 weeks it really took last time. I wondered if it was because it was his second time getting IVIG or because instead of an actual infection his body had to fight, that it maybe was just stress and/or allergies his immune system had overreacted to, so it was easier for it to get back on track.

At this point, I was just happy to have a treatment we knew worked and I didn’t stress about figuring out what caused it. That being said, all the learning I’ve done since this second flare of 2017, has led me to know about the three vital parts of really healing: eradicate infection, reduce inflammation, reboot immune system. So, if there was an infection that we didn’t catch, we didn’t eradicate it because we didn’t even entertain the idea of antibiotics this time. We just skipped straight to the IVIG because it worked so well for us the firs time. And had again. My family and I became even bigger fans of IVIG.

Life went back to normal and with gratitude in our hearts for the return of his health, we held another event to raise awareness and funds, this time partnering with Foundation for Children with NeuroImmune Disorders and helping over 45 families pay for the Cunningham Panel with our proceeds.

Third Flare: January 2019 (Hudson’s age: 11)

We had just celebrated our first Christmas in our new home and it was the best Christmas ever. We had all of our family over and played games, watched movies and kept up all of our many, many big and small Christmas traditions. We were loving our new neighborhood and the many friends we had already made. Things were good. Until they weren’t.

On January 2^nd, Hudson came to me in the office while I was working on the computer, and in distress, explained that he thinks he is having some of his old, intrusive thoughts. I always feared this might happen; because his OCD was “bad thoughts” and not something more concrete (like counting, ordering, hand washing, etc) I had already asked myself “how will we know if he brings those scary thoughts up again one day if he is just recalling the trauma of thinking them or actively having them again?” I expressed this concern to him; I told him that they were very scary and that we had been happy for his sake that once he healed from that first flare he seemed able to forget those horrific thoughts. But I also wanted him to understand that there was some definite trauma from experiencing those thoughts and we always knew it was a possibility they would resurface and make him uncomfortable. I consoled him, telling him I’m sure that’s all it was and asked him to keep us posted on how he was feeling. He was uneasy for the next 24 hours, but I knew that even the idea that PANDAS could potentially be back would make him this way, so I expected it. Friday, January 4^th we had a long-awaited playdate scheduled with our best friends from our homeschool co-op at a new park. The kids had so much fun. They rode bikes and played football in between multiple snack breaks and enjoyed each other’s company for 2 full hours. We wrapped up when simultaneously Hudson and a friend bumped heads playing football and his little sister fell off her bike on the concrete. We were near the end of the playdate anyway, so no one argued it being time to go. We jumped in the car and headed to a nearby health food store that we try to pop into when we’re in the area because they offer many things we like that our larger grocer does not. Once inside, Hudson became extremely concerned about money, doing mental math in the aisles to ensure I was getting the most for my money (a real-life math tool I had taught him in homeschool, to divide price per count to see what you are paying per package, or per vitamin, etc to accurately compare similar brands and sizes). While I appreciated he was doing this unprompted, I could tell it wasn’t for fun… there was a tangible anxiety associated it. When I offered to get his sister and him each a popsicle and he declined, I knew there was a problem. We went home and he got real moody real fast. I knew he was tired from worrying for the past 48 hours and then having this long playdate. We had plans to go to a favorite restaurant that evening to celebrate my sister’s birthday. I told him to take a bath and I’d come check on him in a bit. While he was bathing, my husband arrived home. I told him about our day and odd trip to the store and we went in together to check on Hudson. As soon as we saw him, we cringed. He was sobbing in the tub, aggressively scrubbing his head full of suds, in an attempt to wash away the scary thoughts. Instantly deflated, my husband and I looked at one another with a sad, knowing “it’s back” look. It was 4:50pm on a Friday. Two weeks prior, on Dec. 17^th (before all of our Christmas joy), we had taken him to the pediatrician because after making mud/clay “bowls” on a sunny day after rain, he developed a rash. We didn’t get to see our new usual pediatrician that I had explained PANDAS to, but the lady we did see seemed to know of PANDAS (although didn’t seem to realize the seriousness of it) and had read in Hudson’s notes that we needed him swabbed and cultured for strep. I explained that in 2015 I took him in for a rash only to find out it was Scarlet Fever with strep. She immediately dismissed that possibility because the rash was on his wrists, hands and back and not chest. She still agreed to test for strep but said it was likely either a contact allergy or a viral rash (that she said can come on up to 10-14 days after a virus, a fact I had actually heard before) and we just needed to let it run its course. The rash changed a bit over the next few days but finally went away. At this point, PANDAS was on my mind—wondering “if it was a virus, will his PANDAS flare? Or is he past PANDAS symptoms?” He had received two rounds of IVIG (one in April 2016 and one in Oct 2017) and he was older. The idea/hope is that as the child matures and their blood brain barrier thickens, these rogue antibodies can’t make their way up to attack the Basil Ganglia portion of the brain, causing the neuropsychiatric symptoms. I thought back and he definitely hadn’t shown any signs of being sick—never complained, never vomited or felt like he had fever. I also couldn’t explain a contact allergy (we use all natural EVERYTHING –toothpaste, hand soap, body soap, shampoo, conditioner, dish soap, laundry detergent, sunscreen, bug spray, hand sanitizer, even wipeys—most of this I make myself or buy from a reputable, responsible all natural brand). I thought maybe just the cold mud irritated his skin, but why then did it spread to his back when only his hands touched the mud? Christmas approached and he never showed a single symptom of sickness, and the rash went away. However, this Friday January 4th afternoon at 4:50pm when we were certain his PANDAS was back, this rash and that doctor visit flashed through my mind. I immediately stepped outside to call the pediatrician’s office and I still cannot believe my luck. I spoke only with the receptionist, explained that we had been in there 2 weeks prior for a rash and that while my son did test negative for strep, he was presenting the severe PANDAS symptoms he had in the past when he did have strep. I begged for the doctor to call in a prescription so we didn’t have to suffer the waiting period of the weekend. Within minutes, they called and said the prescription for Amoxicillin was at our pharmacy. I was elated and appreciative and honestly shocked that my plea had worked. Next, I reached out to our Immunologist to tell him what was going on so we’d be on his radar for likely needing IVIG again soon and asked if he had the ability to order a Cunningham Panel (so I didn’t have to go back to our regular pediatrician and request this order like we had for second flare). Not only could he order it, he could actually run it (saving us the trip to a specific lab), but we did need to bring in the kit from Moleculera Labs. So, he ordered the test, Moleculera Labs mailed the kit to us and we eagerly went in to get this underway. In my distress, I didn’t re-read the directions after having gone through this same process of having the kit sent to us a year and a half ago and I completely forgot the requirement of freezing the ice packs overnight before going in for the blood draw. They cannot draw the blood without those frozen ice packs ready; they are designed to go around the sample immediately after and fit perfectly inside Moleculera Lab’s Styrofoam cooler. So, we had to return home, freeze the ice packs overnight, and go back to the hospital. While we were there, we mentioned the rash to our Immunologist and the pediatrician’s opinion that it was likely an allergic reaction to something or viral. He disagreed and said it looked bacterial to him and then I explained that I had let him play in the mud, just off our back porch and he said there can be trace fecal matter from animals, etc and that it very well could have been bacterial. Geez… and I thought I was doing good by allowing my kids to be “earthing” and playing outdoors, having read that being barefoot in the mud is great for our health/gut microbiome, etc. I was sick at the thought that this might have caused this and Hudson never looked at mud the same from that day on. If he was playing basketball and it rolled off into dirt, he’d want it disinfected. This is probably what I hate most about PANDAS, the childhood carefree spirit it steals and the intense constant worry it leaves in its place.  So we had the Cunningham Panel test mailed off and were just awaiting results, had been on Amoxicillin antibiotic for a week and had begun the sad task of alerting friends and family that we were in the weeds again with PANDAS and needed their prayers. We braced ourselves for what was to come.

His Cunningham Panel results came in and were elevated again, proving the presence of autoantibodies in his brain. Dr. Craig Shimasaki, one of the lead scientists at Moleculera Labs explained to me over a phone call that recent research showed that kids high in the last test (Ca/Calmodulin Protein Kinase II) are often sub-clinical, meaning they don’t show typical symptoms when ill. I explained to him that, indeed, that seems to be the case with Hudson.

We scheduled IVIG for Jan 18^th and 19^th. This time they didn’t mess with me about the 2 consecutive-day dosing—like they had for his second flare, but they did get the amount wrong and it would have gone unnoticed if I didn’t watch every move like a hawk for fear of this very mistake. It should be 2 grams per kg of the child’s weight distributed over 2 days. Another way of saying this is 1 gram per kg per day for 2 days. Either way, it’s simpler than it sounds. When you take your child to the hospital, they weigh him in kg. If they don’t say it out loud, ask for it. Multiply that times 2 and that is how many grams total your child should receive over the 2 consecutive days of IVIG. Or, if you know your child’s weigh in pounds, simply convert that to kg on google, then double the kg. (I have previously mentioned the importance of not having a dose broken up over more than 2 days; receiving this high dose in a short period of time is of the utmost importance—is it the flooding of the body with a ton of antibodies at once that tells the child’s misguided antibodies to essentially shut off. I have heard several stories where a parent didn’t know better and allowed their doctor to give the child small doses spread out over weeks and it makes matters much worse. This being said, do your own research on PANDAS protocol for IVIG because as of updating this on August 9th, 2019, I am reading more and more accounts  (mostly on facebook pages for PANDAS) of kids getting their IVIG dose over 5 days instead of 2, or kids that are set up to go in for a dose a month for the next several months. I personally, based on our experience, do not understand this— in our son’s case it usually takes a few months for that first high dose of 2 grams per kg to start working in the first place. These might be based on more recent research or a particular doctor’s knowledge that isn’t wide spread, but for us, I still stick to and demand this PANDAS Protocol for IVIG of 2 grams per kg of the child’s weigh administered over a 2 consecutive day period.

This being our third flare and third time for IVIG, we knew more than ever to hydrate, hydrate, hydrate. We also asked friends and family for very specific prayers that he wouldn’t have the side effects. My son has had awful luck with needles and blood draws. He often got a timid nurse and his anxiety wouldn’t help her nervousness. They “blow” his veins a lot, a term I hate that they would often use in front of him, making him all the more scared. It is not uncommon for it to take 5-8 pricks to get a good blood draw or IV. I had read that being super hydrated helps the veins to be found more readily and for a blood draw to go more smoothly. I was floored (in a good way), when the nurse that came in to set him up with the IV brought this little handheld device with a red light that showed his veins clearly through his skin. She was able to get a good vein with the first poke! I was so elated, so happy for Hudson’s sake, and also so angry this tool existed and yet no other nurse had ever thought to use it (even when we come in warning “he hates needles, blood draws don’t go well for him, etc.”). For all future blood draws, I will request this AccuVein. It helped so, so much.

Now for the mistake part—I confirmed with the nurse that he’ll get 84 grams over the 2 days (what I knew he needed based on my math), she looked over the orders and said that her notes showed he would get 80 grams. I said “no, it should be 84 and no less. I won’t accept the bag until that is fixed.” She said she would send the doctor in to talk to me. Often times for our IVIGs, the doctors that technically administer the IVIG dose have no idea who we are or what PANDAS is, even. They are simply following our Immunologist or Neurologist’ orders. (It’s like going to a OB-GYN for 9 months then having a strange doctor deliver your baby… it stinks but you can’t demand your doctor is there when you are). The doctor came in to assure me that 80 grams is suffice as it’s only 4 grams off. No way. There was no way I was going to let her coerce me into agreeing with this (which is tough because I hate inconveniencing people); should this IVIG not help him, I would forever wonder if it’s because I conceded and gave my okay for a dose smaller than I knew he required. I was able to quickly pull up articles expressing the 2 grams per kg rule. She rebuked, “well, the bags hold a max of 40 grams”, to which I was able to (also quickly) pull up a picture of his previous bag from his second flare that was clearly marked 44grams. I remained calm and level-headed, and my organized photos and proof made her realize I was not going to stand down and she was not going to win this dispute. She re-ordered the second day’s bag. That day’s bag would be 40 and the following day’s bag 44 grams, for a total of the 84 grams his weight called for. I was happy. (click here for my tips on being organized and collected so doctor’s take you seriously – I was actually once complimented for my level-headedness by a doctor, and given his opinion that he believes that is why we accomplished so much so quickly. Doctors do not like frantic parents and will do their best to avoid working with them).

We got started and this time, even on the second day he didn’t have a single side effect! He gets especially anxious about the nausea/possibility of throwing up so for him to get through both days without this was a huge relief. They discharged us within 30 minutes of his second day IV bag emptying. I will report that sadly, on the way home, he got an excruciating headache. I felt horrible. My husband was with my daughter and so Hudson was alone in the backseat with no one to comfort him and we had a 45 minute drive home. When we got home, we gave him Ibuprofen and he went to sleep. It was 1pm and he slept right through dinner waking up at 9pm. Then something terrible happened. I had read about cases where things can get worse before better because so much in the immune system is being mopped around which heightens the immune response (which isn’t good in a child with PANDAS because their immune system doesn’t react properly to begin with). It hadn’t happened to him the first two times he flared/required IVIG, but it was happening this time. This first week home was the absolute worst.

Because his OCD is Bad Thought OCD (click on that hyper link for a very accurate description of it), to watch it get worse before better was GUT WRENCHING. My incredibly sweet, kind, rule-following, compassionate child tormented by vivid imagery of horrific things happening to us as a family and the absolute inability to rid himself of these thoughts, along with the fear that he would somehow do something during his everyday activities that would start an irrational cause and effect reaction that would result in these things happening, holding himself responsible for the thoughts, and having debilitating, whole-body panic due to it. Heart breaking. After about 2.5 weeks of these continued thoughts, he still had them but they were fewer. We know, because the thoughts were his obsession part of OCD and his need to tell us/ensure everything will be okay over and over and over again was his compulsion. The next portion of relief would be bigger breaks between the thoughts and then the ability to calmly mention them to us rather than bursting into tears of panic and strife over them. He also began to believe us more and more when we reminded him they were just thoughts and would never actually happen. His recovery was slow and steady. Life still sucked for him, the persistent worry/concern was still there and he was extremely fearful of getting sick again (holding his breath when people walked by, feeling the need to go spit if someone in the same room sneezed or coughed, as a way of spitting out their germs had they made way into his mouth, etc.). However, he was eating normal and able to function fully at school, play with his sister, etc.

From the outside, you might have thought he was fine. But my husband, daughter (9) and myself all felt he still wasn’t himself. My husband mentioned one night in early May 2019, when we were 14 weeks post IVIG, (14 weeks was the magic number for us for Hudson’s first flare that was very similar in symptom presentation—14 weeks was when all symptoms, even the lingering anxiety, finally dissipated and even Hudson himself reported he was 99.99% back to himself!) that he felt this round of IVIG hadn’t worked. I agreed with him that Hudson still wasn’t himself, but reminded him just how bad it had been earlier this year. The sobbing, the inability to leave the house or eat even one bite of some of his favorite foods, the need to sleep on the floor in our room every night. Recalling all this, he agreed that it had improved some, but he felt only 60%, a number I felt comfortable concurring with. Funnily enough, the very next day I was snuggling Hudson and I asked him how he felt he was doing. He said “I still have the thoughts and I just have to tell myself they are stupid and wouldn’t happen. But I only feel about 60% of my old self.” I found this extremely interesting that he put the exact same number on it as my husband had come up with!

We decided to do something we had talked about but never followed up on: getting a Cunningham Panel run after an IVIG treatment. Because his blood draws were always such a brutal event for him, once his flare subsided and he was back to his healthy, normal self, we never had wanted to put him back through the trauma. But this time, since we felt the IVIG hadn’t brought him 100% back like before, we felt it was the best thing to do in order to see if there was, in fact, still inflammation in his brain. He agreed to it, and actually said he hoped for elevated results. He explained that he’d rather learn that there was some remaining inflammation and another IVIG treatment would be required than to discover that maybe he was just left to feel anxious and unnerved all the time.

The next few weeks were interesting. We did the blood draw for this post-IVIG Cunningham Panel May 8^th (approximately 15 weeks after his IVIG treatment—in the past, he was back to himself by 14 weeks after IVIG). I called ahead to request the AccuVein, the device I had seen the nurse use on his January IVIG that helped her get a good poke first try. When we arrived, the arrogant nurse saw this request in the notes and assured me she didn’t need one of these because she does blood draws all the time. I expressed our desire to have it anyway, reminding her that I went out of my way to call the day ahead and request it to be sure there was one in our room. I heard her and another nurse gossiping about my “ridiculous” request outside the room, referring to the AccuVein in nurse’s jargon as “the lights”; just as I was getting fired up to go into the hall and suggest they set their stupid pride aside and bring in a small device that gives my son much solace, our usual nurse we’d come to know over the years, walked by and encouraged her to use it for placebo effect, noting she had witnessed herself how traumatic blood draws had been for Hudson in the past. Thank God for the good ones. The ones that can set their ego aside and actually do what they are in this to do: care for people. The blood draw, with “the lights” went amazing. We also tried doing the opposite of what we had in the past, and I’m certain this helped, as well. I’ll admit, I got amped up for any needle work because I knew how much Hudson hated it. I’m sure my nerves made the entire room tense enough, and then when I warned each nurse how scared he was of needles and how badly things had gone in the past, trying to encourage their “A game”, I only put the pressure on them which made them nervous and shaky. And the truth is, they do, in fact, do blood draws all the time. So, as a family we made a conscience effort to go in as relaxed as possible and never bring up the bad experiences or his anxiety about needles. I did push for the Accuvein but even then used vague statements with stern, telling looks on my face, such as “things just go so much better with it” (hint hint!).

We went home, knowing the results would take a few weeks at least, and began to excitedly prepare for our pending trip to New Mexico and Colorado. My husband and the kids had planned this trip on their own and surprised me on Valentine’s Day with all the info. Ironically, it was planned for the first of June with the idea that by then Hudson would be well and we’d be celebrating his health and the start of summer. He obviously wasn’t feeling 100% and the weeks leading up to the trip, things got worse. For starters, his sister got sick. This was literally the first time she had actually come down with something while he was recovering from a flare. I won’t lie, I was petrified myself, but had to contain my concern to calm Hudson. His worry was palpable. My husband is a GM and usually has very flexible work hours, a luxury we take advantage of when Hudson is in a flare; if I need him home more than usual or available to be with our daughter so Hudson and I can go on doctor visits, he is there. But today was his twice annual meeting with their company accountant to go over all numbers—a very important meeting he can’t get out of. I called our pediatrician and couldn’t get in until 4pm. We packed some snacks and got out of the house, I was hoping being outdoors and running errands would distract her from feeling so bad and Hudson from worrying so much about catching whatever she might have. Before we even got out of the neighborhood, she was wailing in discomfort, so instead we headed straight to the nearby Texas Med Clinic. While in the waiting room, filling out paperwork at the front while she cried in the corner and keeping an eye on Hudson who was a stiff, anxious mess in the opposite corner trying to keep his distance from her and another man in the waiting room, my heart ached for single moms who have to endure this PANDAS battle on their own. I often find myself sleepless and sad thinking of other families. I am aware of the comforts we have that make this nightmare slightly more manageable: the fact that we were already homeschooling. The fact that I run a business almost entirely from home. The fact that my husband does have a lot of flexibility—he can go in at 5am for instance so he can leave at 2pm so we can attend afternoon appointments together. I wonder about the families that have something else going on, as well: what about the PANDAS mom who got fired for missing so much work to care for her kid? What about the families who also have a teenager they suspect has gotten into drugs? What about the couples who were on the brink of divorce when this struck their family? What about the families who live in a small town with no doctor within hours that has even heard of this? I realized in this helpless moment in the Med Clinic that I had never even thought about the single moms. It is heart breaking. People close to us, the ones that most know what our daily struggles are when we’re in the depths of a flare, often ask me “how do you do it?” I just do. What other choice do I have? I wake up early, I go to bed late. I read and read and read and read to learn more. I call and badger doctors until they help. I distract and console and reassure my kid. All day. Every day. One foot in front of the other. What else would I do? I guess that is how the single moms do it, too. God bless them.

Before even being called into the back, my daughter announced she was going to vomit. We ran out the front door and didn’t make it to the grass. My son was tormented. It was as if I could feel the pit in his stomach in mine. I empathize with his fear of getting sick so much—it’s a different beast for him. It can mean months of agonizing thoughts, weeks of no appetite, irrational fears, debilitating indecision, messy handwriting and inability to focus. It’s not just fever, puke and a few days of feeling weak and tired. He’d welcome those symptoms with open arms.

As would be my luck that morning, the old man in the corner came up to ask if this illness just came on out of nowhere for my daughter. I knew his nearness was making my son upset, so I tried to be curt with him so he’d get the hint. He didn’t, he wanted to go on and on about how his wife got sick suddenly, too and the doctors told him there is a virus going around. Thank you, sir. Thank you for dumping a boatload of anxiety onto my son just now. That’s what he did. Hudson couldn’t take it. When we got called into the very first room in the hallway and I realized I had a glimpse of the first parking spot outside the door, which is where we were able to park, I gave him permission to go sit outside near the car. They checked her for strep and flu, both came back negative and they said it must be a virus. At this time, my husband called, apologetic for not being available that morning—he was all caught up after reading my frantic updates via text messages. He was on his way and said he’d pick up Hudson straight from the front curb by my car so I could check out and head home with sister while he took Hudson to Bass Pro Shops—fishing is his absolute favorite thing in the world, so daddy knew this would be the best distraction.

Once home, I again realized an advantage we have that not everyone does. We have a small apartment set off completely from the rest of the house, a future place for our parents to stay when they’re elderly. Staying here would quarantine my daughter (and myself had I been exposed) from him. We had 4 days until our road trip. We stayed in there for three days, even though she felt better after 24 hours. It was what Hudson needed to feel even remotely safe to be around us again. On the final day home, we received his Cunningham Panel results—still elevated levels. We reached out to our Immunologist and expressed that we would most likely want to have IVIG again when we got home in ten days from our trip.

The next morning was go time—but not for Hudson. Instead of being up 2 hours before everyone else excitedly and responsibly packing the car, like we all anticipated per his usual, he didn’t want a bite of breakfast and asked if he could go outside. I hurriedly did last minute chores around the house so we’d return to a clean home and caught a peak of him outback pacing oddly. I went outside to see what was up. He burst into tears. He wanted so badly to not be anxious, he explained, and to be excited for the trip and he just couldn’t help but be super worried and think bad thoughts. In the car, he wanted to wear a mask for fear of being near his sister for so many uninterrupted hours (thinking that people are contagious long after they are better is a common, and understandable, concern of his) and spritzed himself often with an essential oil blend in his attempt to ward off illnesses. I had gotten into essential oils during his very first flare—I was willing to do anything and everything I could to help him heal and avoid future sicknesses and I loved the sense of control making these concoctions gave me; when everything else was spinning out of control, it was therapeutic for me to go into the kitchen and diffuse a calming scent while making homemade counter spray, bathroom disinfectants, allergy sprays for their pillows and more. He really enjoyed my essential oils as they gave him something to focus on.

Within just a few hours of the trip, we stopped to eat and his anxiety was so bad, he couldn’t even go in the restaurant. It had a small table outside, more for smokers than to eat at and he and I sat out there while my husband and daughter quickly ordered and ate indoors. At one point, he even asked if he could go back to the car and just lie down. I didn’t know it then, but this would foreshadow what much of our trip would look like. He enjoyed the next day the most because we spent nearly all of it in the car, making short little stops for under an hour at places like Roswell, NM to check out the silly alien stops and Echo Ampitheatre, a natural cave that created huge echos when you spoke. But once we got to our actual destinations, he started having severe trouble eating, that only got worse each meal. He’d ask if he and I could go outside, so I’d wrap up or ask for mine to go, then sit with him outdoors while we waited for the other two. It got worse: by the fourth day, he was dry heaving in the mornings before we even left the hotel, and physically couldn’t enter a store or restaurant for fear of throwing up in public. This new phobia came on fast and extreme. Questions like “what happens if I throw up in public? Who cleans that up? What is the worst case scenario if I puke in a store?” were rapidly and nervously being asked of us. A highlight of our trip was to be a 3.5 hour glass-top, mountain-side train ride from Durango, Co to Silverton, with a 2 hour layover in the little town to eat and shop and then a 3.5 hour ride back. This morning, eating was nearly impossible and yet we forced him to have several bites, as we were actually beginning to worry about malnutrition at this point. We couldn’t believe it when we got up to leave the outdoor section of the Starbucks we were eating at and as soon as we hit the public sidewalk to walk the block down to the train station, he actually did puke. This did not help our week-long argument: we kept telling him that he was making himself so worried about puking, that he felt sick, but we kept assuring him he would not actually vomit. This was a bitter sweet day for me. We had plans to capture a breathtaking view on this ride that we would blow up to hang on a blank wall we’ve had trouble filling for over a year in our dining room. Hudson was so anxious and limp, he wanted to sleep almost immediately. He saw only about the first 20 minutes and the views he missed and history facts from the tour guide he slept through made it difficult for me to enjoy as much. I heard once that a mom is only as happy as her saddest child and I felt this firsthand this morning, like I had more days than not since this year had begun. Once in Silverton, things got even worse. Not only would he not enter a restaurant to eat, he’d barely sit up on the bench outside. It was the smallest town we’d ever been in (the restaurant/bar was famous for having hosted the real Doc Holliday and Wyatt Earp) and my husband instinctually thought to ask the barkeep what we were to do should we have an emergency in such a small town like this? Such a small town it was, that her father-in-law, the Chief of the Fire Department, was eating in the restaurant at that very moment. He came out front to see Hudson and brought him a Powerade drink, making sure we forced it down him. Only knowing what little we explained about PANDAS, his concern was Altitude Sickness. This was something I had been looking into and well aware of the entire trip. I learned only days before we left that the higher altitude can really negatively affect certain people. It can be tough for anyone to adjust to, but in others can give them headaches, nausea, fever and is not something to mess around with. The remedies were tons of hydration, extra carbs and getting to lower altitude. That morning’s train ride had steadily gotten us to our highest elevation yet.

In our recent PANDAS research from the beginning of this year’s January 2019 flare, I had heard of lots of parents utilizing CBD oil to help with their child’s symptoms, namely the anxiety. I had been leery to try something so new, something derived from the same plant that creates marijuana, and just to add anything to the mix. We were in Colorado, where not only was weed legal, but all things health and all-natural were the rage (with Oxygen bars and spas on every corner to help people with the lower oxygen levels in the higher altitude). We had about 45 minutes left before the train started back down the mountain and I asked Dustin to walk around this super small town’s super small main street and look for some CBD oil. I would try anything at this point. It was so hard to tell: did Hudson get his sister’s virus before we left and this was a new flare’s reaction to it? Was he incredibly anxious? Did he have altitude sickness? I knew in my gut that it was likely a combination of all of those. We got back on the train and I was ready to hit lower and lower altitude. We woke Hudson up to see some of the amazing sights he missed on the way up and gave him the CBD oil. He quickly fell asleep.

Dinner that evening was dreadful and tensions were rising. My husband began to be so concerned about his nutritional levels, he started forcing him to eat. I could feel the angst in Hudson and cringed at the idea of forcing him to do something so tough on him, especially with the state of nerves in his belly. I knew my husband was only concerned for Hudson’s health and also that his breaking point was near due to all the stress. The entire trip we had questioned if we should turn back home and the only reason we had not is because Hudson had consistently apologized for ruining this trip we had looked forward to for so long. We knew that if we actually wrapped it up, he would know that it was because of him and I couldn’t bare the thought of him feeling that guilt for the 16 hour drive home. However, the next day was to be our last in Durango and then we were headed to Ouray, the part of the trip the kids were most looking forward to, but also the highest elevation. No thanks. I emailed our Neurologist and Immunologist to alert them that we’d want IVIG as soon as we got home and began watching Hudson even more closely. We decided to take him fishing on the last morning instead of white water rafting—there was no way our nerves could handle the especially rough rapids they were reporting this year, especially considering only Dustin had ever been before so I was already a bit nervous about that activity. We took Hudson to an incredibly gorgeous spot recommended to us by a local… he did have one interesting catch in which he got a fish with another angler’s hook stuck in its belly. My husband removed that and tossed him back in, but he quickly went belly up which sent my daughter into a full on melt down, the animal lover she is. Hudson didn’t seem motivated to fish much and had wanted to keep laying down on the picnic blanket we brought. We all sat in silence, staring at the dead fish and no doubt thinking about this sad trip and now this sad fish fatality. Suddenly, he began to wiggle. And wiggle and wiggle. He was alive! We were all elated, but didn’t know if he could turn himself back over and was out of our reach. He finally flipped over and swam off! It felt like such a God thing in that moment—a little glimpse of hope that we so desperately needed! When we returned home, this sole fishing victory would be the part of our trip that Hudson would retell to others.

I recalled during our first flare putting homeschool on the backburner and just trying to get Hudson outdoors and distracted each day. I took the kids to the zoo and Hudson was inattentive and didn’t engage with his sister or the animals at all. It broke my heart and was a huge spotlight on the seriousness of what we were dealing with. I remember praying to God that we’d get through this, and right at that moment something caught my eye. We were looking over a sunken rock quarry for its enclosed animal and from the middle of the solid rock wall grew one long, beautiful, lone yellow flower. I can’t explain how, but that flower brought me such comfort. It was like a literal sign from God that you can push through the toughest of times and still blossom. I took a picture of that flower and to this day, it is framed in an equally cheery frame in our guest bathroom to act as a daily reminder of hope and what we’ve made it through.

Seeing Hudson opting to lay down over fish on his last day here was all the confirmation my husband and I needed. I walked a little way down, out of ear shot of the kids, and made some calls to cancel our hotel in Ouray and Jeep rental. Then I emailed our doctors again to let them know it was getting worse and we were heading home 4 days early. We hoisted Hudson onto my husband’s back for the 2 mile trek back to the car. The fact that my 4’10”, 90 pound son let my exhausted husband carry him, along with tons of fishing gear, uphill two miles without insisting he could walk, was yet again confirmation that he was in no shape to stay here, let alone get to higher altitude.

We gently expressed to the kids the change of plans. We explained that white water rafting and an off road Jeep rental were both things we could do in our home state of Texas and that we’d make the trip home still feel like vacation by stopping again in New Mexico to visit the White Sands National Monument. We also reminded them that this meant we’d see our dogs, who they both missed greatly, 2 days sooner! To our surprise, they were okay with it all, and Hudson in particular was relieved to be headed back home and to lower and lower altitude all the while. He felt so bad at this point he was over worrying if he was ruining or shortening our trip, he just wanted to be home so badly.

We made it home and got set up for IVIG on June 12^th. For the first time, they offered to let us do the first dose, go home and sleep, and return for the second day’s dose. Usually, our getting IVIG meant a 48+ hour stay in the ER portion of the hospital. This time, we’d be in our Immunologists’ infusion clinic. Aside from the same prideful issue I had with this nurse not understanding why I wanted her to use the AccuVein to help his needle prick go more smoothly, things went very well.

I wrote this letter before heading to the hospital for IVIG and gave a copy to every nurse and both of our doctors. I am a strong believer in the self-fulfilling prophecy—the idea, in a nutshell, that if you tell someone he/she is an idiot, he/she is bound to act a fool, confirming your opinion. Adversely, if you tell someone he/she is incredible, it is common to see him/her step up to achieve said compliment. I needed them in my corner. They each, upon reading it, came back into the room to discuss how eye-opening it had been for them. Mission accomplished. Another reason I wanted to take them “behind the scenes” of a family dealing with PANDAS is because Hudson, as most PANDAS parents will report, had an uncanny ability to pull it together for short doctor visits and even phone calls or visits with grandparents, often leaving my husband and I a bit frustrated that these people likely think we are exaggerating his symptoms. I saw a valid quote on this great neuroimmune disorder website that said “my kid isn’t faking being sick, they are faking being well.”

Over the past 8 weeks, it had become increasingly important to me to figure out what exactly was triggering my son’s flares. Aside from the first flare, which we chalked up to the case of Scarlet Fever strep he had 3 months prior that ultimately resulted in a staph infection in his tonsils, we hadn’t known what caused the second and third flare. Also, was this just his third flare not fully healed, and possibly made worse by the exposure to his sick sister and trip into higher altitude, or a completely new fourth flare? I wanted him re-tested for some common offenders, having read a super recent study that out of 1,000 kids with PANDAS, strep, flu and mycoplasma were the top three triggers. So we tested him for mycoplasma that morning of his June 2019 IVIG, as well and were told to expect the results within a few days.

We had a few small “staycations” planned for the next few weeks, which ended up being a blessing. Not only were they something to look forward to and a distraction while we waited for this IVIG to kick in, they taught Hudson something valuable about himself: that he preferred to vacation simply and close to home. He said one day “I thought I’d love the mountains, but really I just love the trees.” This was sweet and funny, because my husband and I are self-proclaimed homebodies that much prefer a drive to a cute town a few hours away to stay in a cabin than some extravagant trip out of state and can’t fathom going out of country! We didn’t want to impose this opinion on our kids, however, and thought Hudson would have LOVED Colorado, especially with his extreme passion for fly fishing. It didn’t work out that way, at least not at this time in his life.

During the staycations, I read two books written on the topic of PANDAS by the mothers. The first, What Happened to My Child was eye opening. I thought I didn’t need to read another family’s sad journey through this hell because we were living it ourselves and had found doctors and a treatment plan for our son. But I picked up on so many things in her book that I’d never heard of before. At one point, she mentioned her son’s flare that had just started to calm with the help of antibiotics, flaring again after a day trip into the mountains followed by a day at the neighborhood pool. She reported learning afterwards that both altitude and chlorine can negatively affect kids with PANDAS. I had actually heard that about chlorine, although it doesn’t seem to affect Hudson, but thought that was interesting about the altitude as we had just witnessed this ourselves! She also mentioned using LDN (low dose Naltexrone), as a means of anti-inflammation in the central nervous system and for joint pain her son was experiencing. I had somehow never heard of this and put in my notes should we ever need to learn more about this and possibly use it on Hudson. She also talks about getting a 23andme test done on her son to learn about his genes and potential mutations, and then taking this info and muscle testing into account to learn proper dosages for supplements. Most notably, all this info caused her to change the amount of vitamin B she gave her son which ended up making a huge difference. This really stuck out to me!

All these years, for each flare, we started Hudson on what Dr. Rao of Plano, TX calls his “PANDAS Pack” : high doses of turmeric with black pepper, NAC and Vitamin C for their anti-inflammatory properties. Only recently I had met a mom that casually mentioned she wouldn’t give her son the turmeric because of something having to do with that food falling in his “to avoid” category on a recent micro-nutrient deficiency test. Now this revelation from this mom’s book… I started to wonder if there were any of these supplements, that were supposed to be natural and helpful, that to Hudson’s body were actually more harmful than good?

We ordered the 23andme and headed to Port O’Connor to visit Grandad for our annual 4^th of July trip. I had packed all of his supplements and thought to myself “I’m not going to change anything now, but when he finishes these bottles, I’m going to look into these before replacing.”

He had two very anxious mornings while down there, but was able to re-coop enough to go fishing and mostly enjoy the rest of his days. The third day, I had forgotten to give him his morning supplements and noticed he had the best day. I intentionally didn’t give him his nighttime dose.

Days before leaving for this trip, we took his sister to the ENT after a few weeks of severe congestion hadn’t been relieved with the typical remedies of saline, breathing in Eucalyptus, hot showers, etc. They felt she had a Sinus Infection and put her on antibiotic. By our last day in Port O’Connor, Hudson was doing really well and I couldn’t help but wonder “is there any correlation between his sister being on an antibiotic and him feeling better?!” I realized it sounded out there, but I’ve read of PANDAS kids so sensitive that even if they don’t contract an illness, just being near someone that was sick could cause their own antibodies to go haywire. They call them “strep detectors.” Another mental note for when we returned home.

We got home on a Sunday, and Monday morning at 5am I woke up alert with a thought instantly on my brain! For months, at bedtime Hudson would mention that it felt like there was hot glue in his nose. He would try to blow his nose a few times, to no avail, and wasn’t complaining so much as just telling me about it, and it was only at bedtime. In the mornings, he would often have some phlegm to spit up, but I didn’t think much of this as allergens are high where we live. But this morning, all of this info came crashing into my thoughts—Sinus Infections can sometimes be contagious if they are viral instead of bacterial. What if Hudson also had a Sinus Infection and because he is sub-clinical (which means he does not present readily observable symptoms), this “hot glue feeling” was actually chronic, severe congestion… and what if this seemingly small issue, because it was constant, was just enough to keep his misguided antibodies on high alert and what if this is the reason his first IVIG from January hadn’t been able to fully do the job? I recalled the three steps to really healing PANDAS: eradicate infection, reduce inflammation, reboot immune system. That was my frustration, I hadn’t been able to eradicate infection because we never could find one—he tested negative for strep, flu and even his recent re-test of mycoplasma done during June 2019 IVIG had come back negative! I called the ENT as soon as they opened that morning. I wanted to move up my daughter’s follow-up because she had finished her 10 day course of antibiotics over the weekend and still wasn’t feeling better, and I wanted to talk to them about my son.

After expressing our situation with PANDAS/looking for Hudson’s trigger, the ENT’s PA agreed to extended my daughter’s antibiotic another 10 days and put Hudson on a different one for 20 days. She wanted a CT scan of each once complete.

Within 3 days, Hudson was more himself than he’s been all year! He has always reported to us in terms of what percentage he feels like his old self again. 5 days into the antibiotics, I was out in the yard one evening pulling weeds and he was dancing around enjoying how much he was making his sister crack up. Carefree. That’s the best way to describe his demeanor in that moment and the main thing lacking from his personality this entire year. I asked “hey bud, how are you feeling these days?” He answered, “Oh, just 5%…away from 100%!” with a huge grin on his face. Relief. Elation. Gratitude. Some of the best feelings a parent can have.

At the time of publishing this, August 9^th, 2019, Hudson has finished his round of antibiotics and we have an appointment next week to go over the results of his CT scans to see if there is anything that will continue to cause congestion. His sister’s CT scans didn’t show anything wrong and her adenoids that were removed in 2016 for congestion issues hadn’t grown back; however, even after 20 days on antibiotics for congestion and daily nasal flushes and allergy meds, she still has little relief. The ENT prescribed daily Claritin, Flonase and Singulair for my daughter assuming she is just a sufferer of seasonal allergies year round. I can’t stand it when doctors want to treat the symptoms instead of figuring out the cause. I also hate the idea of her being on these meds, especially indefinitely, but am allowing her to take these presently because it is so severe and gives her so much distress; I’m in the process of researching more natural remedies and possible homeopathic methods of curing her allergies for good.

Hudson’s 23andme results came in and I have no idea how to read them. We’ve heard of a practitioner* not too far away that practices LDI (low dose immunology therapy) and LDA (low dose allergen therapy) and I’ve read many positive reviews about working with her on PANDAS facebook pages. Since Hudson is recovering nicely from this recent flare and the antibiotics combined with the recent IVIG seem to have him back to baseline**, and my daughter’s allergy issues are more acute, I thought I’d check this practitioner out with my daughter as her first patient (instead of Hudson) and while there pick her brain a bit about PANDAS to determine if I wanted to return to her to discuss proactive measures of keeping Hudson healthy. I am unsure what I think and because my husband wasn’t with us to give his input/blessing on a new form of treatment and we haven’t researched this to our comfort level, I opted not to perform any actual LDI or LDA that day on my daughter and haven’t yet decided if I’ll return to take Hudson. I am as open-minded as they come regarding alternative methods of achieving optimal health. I believe today’s toxins are much to blame for issues like PANDAS and even believe strongly in things such as the negative effects of electromagnetic frequency exposure and have taken great measures to reduce that greatly in our home and cars. That being said, some of the testing she did seemed so incredibly out there and there was absolutely no way for me to verify any of her tests since it was very much reliant on her senses, etc. I actually agree with the idea behind these therapies, but the process used to determine dosing seemed dubious to me (i.e. pushing my daughter’s arm down and counting until a reaction was felt—the number she happened to be on when she felt that reaction determined her dose.. 1, 2, 3, 4… “ok, she’ll need to take this for 4 days.”) Fascinating? Or a hoax? How am I to know?! I don’t want my kid to be a science experiment. I feel equally skeptical of the ENT doctor who just told me I should give my nine year old daughter 3 pharmaceutical drugs a day perpetually. PANDAS makes you question everything.

So, that’s where I’m at currently: extremely torn. Could this woman’s self -proclaimed “weird” methods be the answer to both of my kids’ ailments? Or will studies come out in the future that LDI and LDA therapy are, in fact, harmful or at best a scam? I can’t bare the idea of Hudson dealing with another PANDAS flare. So, at this very moment, I don’t have a strong enough opinion about LDI or LDA to post here. In an effort to not just share my thoughts, but others’ as well, here is a story by a mom who swears LDI is the treatment option that brought her son fully back. And on that note of sharing others’ stories, the other book I just finished was Joshua’s Missing Peace and in this book she references yet another book that she read that turned things around for her family by pointing them in the direction of a PANDAS diagnosis, and that book was Saving Sammy.

It just goes to show that tuning into the experiences of other families that have been through this is often the most valuable use of your time. If even one sentence of our story sparks an idea or tips you off onto a path you should go down to attempt to get more answers for your own child, than all the very early mornings spent working on this site were worth it!

I want to help as many families as I can and shorten the PANDAS timeline for countless kiddos out there suffering beyond their own control. I also want my son’s life to return to normal, and for him, that means (in his own words) mommy “not talking about PANDAS so much”. Like I mentioned, I’ve been connected to over 40 moms and it’s not uncommon for me to spend evenings on my front porch hearing their stories and sharing any tidbits of ours that I think would be helpful to them. This gives me the greatest sense of fulfillment, knowing our family might have played a small part in helping another child. Unfortunately, it also results in me retelling yet another sad PANDAS story to my husband, pushing my kids away so they don’t have to hear (but they  know I’m talking PANDAS) and then quite likely being in a slump for the next few days carrying the stress I know that family is experiencing on my own shoulders, as well. I know this isn’t all I’m meant to do to help, sharing this information on this site, but it is what feels right for now. I also know that putting it all here will allow me to help more people more quickly. I often see questions posed online or people asking for suggestions and type out a long response to each. I also get the same types of questions via text several times a week and write a lengthy response as soon as I have time. With this site, I’ll be able to copy/paste the link to a specific page on my site that I think might have the info they are seeking. Again, so much of what is on here isn’t my own, but rather links to where I ascertained the info to begin with.  

Hudson is a kid and just wants to move past this, and fish! (Click that link to visit Hudson’s own website where he blogs about his passion for fishing. Fishing and being in nature has proven very therapeutic to Hudson. We are diligent about tick control and all natural tick repellants, as ticks can carry Lyme Disease, an infection many in the PANDAS community unfortunately find themselves dealing with, as well.) Seeing Hudson in his prime is a wonderful reminder, and great example to show your child dealing with PANDAS, that this disorder does not define him and good times can be right on the other side of recovery for them, too!

*When I first mentioned the lady that practices LDI and LDA to my husband, he asked if she was an actual doctor. I looked up for my own sake the definitive difference between a doctor and a practitioner and what I found interested me, especially after all we’d been through with doctors. They want to medicate; I want to heal. So, maybe despite my skepticism, a practioner is where it’s at, afterall! Click here for the definition I found so intriguing.

**I mention above that Hudson is back to baseline; that is a hard word for me to commit to because it means “a starting point used for comparisons.” But I’m not sure any kid that has been through PANDAS or any devastating journey with illness is ever totally back to baseline. How can he be the same as he was before? I’ve said it before and it bears repeating: in my opinion, the worse thing about this disorder is the carefree spirit it steals from the kids and the low-grade (at best) anxiety it leaves in its place. We appreciate that Hudson needs therapy and so does he. Just last night he said he gets worked up sometimes remembering a thought he had and hates when he thinks about the fact that he thought IVIG would cure him, but then he got PANDAS again. I told him that I understood and that many traumatic occasions in life result in this same sort of uneasiness in people of all ages for all reasons, stating the example of being betrayed by someone and having to learn to trust the next important person in your life. It’s hard to let go of that fear that the bad thing will happen again, but let go we must. We closed this bedtime tuck-in conversation in agreeance that seeing the therapist that helped him through his first flare would be beneficial. I put a call in this morning to get Hudson on his schedule.

As far as supplements go, I list here what supplements we’ve always done. But remember, we took him off all of these in mid-July 2019 and were going to slowly add them back into his regimen, one at a time so I can really record the effects and he can report how he feels on each. We made this choice after I recently learned that there are contraindications of Turmeric for kids with COMT (Catechol-O-Methyltransferase) and Methylation issues (something his 23andme results are supposed to shed light on). What is game changing for one child might be toxic or harmful to another. Turmeric in general has so many health benefits but we may not continue it after learning more about our son’s DNA/make-up. Also, when we choose to give him Ibuprofen, it has always been the Aleve brand and I’ve recently read many accounts where the other brands are not helpful/make flares worse but that Aleve in particular seems to help. This may be why we’ve noticed improvement when we give to him, because we happened to be using the Aleve brand. It has to do with the fillers and other ingredients that are in these vitamins/supplements/medications as to why some brands can work better for your child than others, so pay heed to the labels! I hate when healthy vitamins are encapsulated in junk and mixed with bad vegetable oils! I adhere to this doctor’s advice on dosing for ibuprofen and this mom’s (again, just a mom with an opinion) suggestion on Vitamin C powder. There is also info here about Vitamin C flushing and a recent conversation I had with a mom suggested I look into Buffered Vitamin C, so there is ALWAYS more to learn!

Right after making this decision to stop and then restart supplements and vitamins, we put him on the antibiotic for suspected Sinus Infection so I didn’t start any then and have yet to reintroduce any. I want to take what I learn from his recent 23andme reports and my new knowledge on muscle testing for dosing into account and determine which to try first and in what doses. There is so much info, too much perhaps, on supplements and vitamins and my mind is spinning. Take this one argument, for example: immune booster vs immune modulator. Are we trying to boost their immune systems to ward off illness, or modulate their immune systems that have proven to be too overactive, causing the flares? And what about these things I hear about but have never tried? Guna Flam, Colloidal Silver, Alka Seltzer Gold? I’m NOT a doctor, (or a practitioner ;), just a mom who reads and reads and reads to learn about these things. Praying for clarity and guidance on this matter. For our family and yours.

If you are reading this because you are about to embark on IVIG or just did, remember: the healing from IVIG can be super slow. In fact, in Joshua’s Missing Peace, she says 14 weeks after IVIG was their magic number and for our first flare, that was our healing sweet spot, too! Do not be surprised or disheartened if you don’t see any improvement for a full month. Most don’t report a relief of symptoms until 4-8 weeks post IVIG, with some reporting an even more delayed response. I’ve also read that improvements can be made for up to a year! Another thing, keep in mind that IVIG may not be the path for everyone. I once asked our doctor if he minded that I shared his name and sent so many parents his way. He responded that of course he did not, but these parents needed to understand that every case is different and they can’t, upon hearing our success stories with IVIG, all come in demanding the “Hudson special.” Understood.

Lastly, if your child is or has been on antibiotics, it’s so important to their gut health and overall health and mood, that they also be on a probiotic. Antibiotics really mess with the gut and cause long term problems. Do your research online as to why these are so important. But, sooo many probiotics (including almost ALL yogurts and salad dressings marketed as healthier due to their live cultures/probiotics) contain the strep strand–it’s easy to tell. Read the ingredients–anything that starts with “S. ____” followed by a long word –the S. is short for strepptococcus. You must find a probiotic that is suitable for children with PANDAS. We love Gut Pro… it understands the importance of it not carrying the strep strand for people with autoimmune disorders, especially PANDAS, and it comes in powder form so you can easily give your child the high doses (we give Hudson 25 billion IUs/day–just drop that amount of powder on top of applesauce and he takes it) without them having to swallow that many pills to get to that higher amount. 

Sleep when you can. Ask your husband and other children for grace while your PANDAS child gets all your attention. Learn to say no to commitments outside your family. Cry in the shower. Join online support groups.

Click on the below links and around this site to speed up your researching.

Click here to hear how Hudson describes having PANDAS (helpful to show other kids so they don’t’ feel alone).

Read here to learn about the IVIG Protocol that we have always followed.

See my tips on staying organized with all the tests, correspondences, notes, pictures, etc.

Read some quick ways to tell friends and family and coworkers what’s going on.

Letter to pediatricians.

Letter to teachers.

Letter to treating doctors.