PANDAS Sucks exists to tell our collective story about PANDAS/PANS. It is my pleasure to provide a forum for Moms and Dads to tell their PANDAS/PANS stories. (HINT TO DADS!…let me know here if you want to tell your story!)
This installment of Your Words comes from my good friend Kristen. I met Kristen personally in Indianapolis back in November 2011 at the first PANDAS Parent Meeting, which I helped organize along with two other awesome moms (Vickie & Tamara). That was such an amazing day with a bunch of amazing PANDAS Moms & Dads (the term PANS wasn’t around yet!). Meeting Kristen that day and listening to her tell me about her story was one of the highlights. We became Facebook friends and shared even more of a bond after that. I was so pleased when she agreed to write a guest blog for PANDAS Sucks. Kristen does a lot of good PANDAS/PANS Advocacy work as part of the Great Lakes PANDAS/PANS Autoimmune Encephalitic Advocacy Group (PANDAS/PANS). I’m happy to share her activities so they can serve as inspiration for others like they have inspired me. Here’s Kristen’s Story…in Her Words:
I know the road to getting PANDAS diagnoses for your two sons was rocky. There were many doctors and many misdiagnoses. How would you describe that time, and just how long did it take to get the correct diagnoses and appropriate treatments for your boys?
Kristen: It was surreal and I felt very much like I was in combat against PANDAS, the school, my child (physically), disbelieving doctors/family, etc…. And then later I was trying to fly under the radar (from disbelieving doctors, school/truancy office, CPS)….while still fighting. The degree of stress I was under during the worst of it was beyond anything I had ever experienced (and I grew up with Dr. Jekyl/Mr. Hyde Dad who probably had PANS himself, so I’m quite familiar with stress). I developed cat-like reflexes with my child when he raged. We were turned away from so many doctors. The pediatrician even accused me of Munchausen’s by Proxy. My 7-yr-old son was hospitalized in 2 hospitals back-to-back then transferred to a psychiatric hospital. I remember sitting like a limp noodle in the recliner in my son’s room at the first hospital and trying to explain to my now late husband why I was so tired. I told him that the fatigue I was feeling was a special kind of tired due to extreme stress, like the kind that burned your adrenals and melted you.
My older son’s explosive onset was the summer of 2010 but his hyperactivity had been ramping up since the spring of that year when he had 4-5 strep throat infections over the course of 2 months, the 5th infection having gone untreated because the doctor forgot to swab, despite having written in his notes that my son had had a red throat. I had decided to give in and try an ADHD medication during the summer break from school. Wellll, giving him Adderal was like putting gasoline on a fire. He went from happy but hyper to raging within days of trialing the Adderal. I was sure these were a type of seizure because I also saw him stare off into space sometimes and one time that spring he dropped to his knees on a walk, looking zoned out.
He had a couple months of respite when coincidentally treated for strep throat just before school started that fall but once exposed to his teacher’s strep throat infection, it quickly went from bad to worse until he ended up in the psych hospital in May of 2011. He was too anxious to enter the classroom at his 2nd grade open house, hid in the bushes outside the school. It took until January of 2012 before we saw a doctor to treat my older son. I first learned of PANDAS in Dr. Bock’s book, Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders. In chapter 5, I believe, he describes a girl named Alicia (or similar) who had explosive rages that come on suddenly and ended suddenly. I had borrowed that book from the library and had seen “PANDAS” referenced but had skipped chapter 5, in which it was described. I lent the book to our adult babysitter/nanny for her son who had sensory issues. She read chapter 5 and told me that whatever this Alicia girl had, she thought that my son had also.
My younger son’s symptoms started fall of 2012 in preschool. He was having what appeared to be repeated sinus infections. My younger son had no strep or mycoplasma titers so despite consulting with a PANS specialist, it took longer to find his trigger – which was CDC+ Lyme – but having his enlarged adenoids removed in spring of 2013 brought his symptoms down to a functional level. Because his PANS and Lyme were identified (by moi) earlier than his brother’s and treated earlier, his symptoms never got as bad as his older brother’s.
I have told you before that I very much admire your ability to go back to the naysayers and doubting doctors after you received your sons’ diagnoses. What would you say to a parent that wants to take this step but has a mental block about it. (And yes…I’m asking for myself. I am still bitter about the doctors that told me it was NOT PANDAS when it clearly WAS PANDAS. We lost so many months when we could have been treating Jesse!)
Kristen: First, thank you! Well, I haven’t gone back to those doubting doctors in person but I have mailed them information and our group exhibits at the annual Michigan Chapter of the American Academy of Pediatrics annual meeting, and other events. What drives me is the intolerable thought that another family in their practice could be struggling in the same mire we were and the possibly overly optimistic belief that if doctors only knew better, they would do better, be willing to help these families. In my conversations with pediatricians at these events, I am convinced that this is true at least for many doctors. They may not feel comfortable treating it, but many are now comfortable referring families to specialists, if they only knew who to refer families to.
The other thing that motivates me is my sense of justice. Those doctors (and PANS) ruined my both my sons’ childhood and sense of security in the world, alienated him from his friends, school, society, ruined his reputation as a good boy to outsiders, family/friends who choose to not understand the disorder and worst of all, ruined his view of HIMSELF. Not to mention unnecessarily allowed PANS to disrupt our families’ PEACE. My son feels bad because the last time he saw his Dad alive, he had been oppositional to his Dad. Those naysayer doctors are not going to get away with that, not without hearing (or reading) a piece of my mind!
What I would say to other parents is first, wait until you are physically and mentally able to take on advocacy efforts and then do so in at a pace that you can handle, in a way that is the biggest bang for your buck. If reading posts in the support groups is weighing you down, take a break from that and mail out some letters to a few of your child’s former (or current) doctors with Dr. Agalliu’s new study, a PANDAS Network brochure and a Moleculera Labs brochure. Educating doctors on PANS, whether by mailings, at appointments or even better, when exhibiting PANS at an event, has been the best therapy for my PANS Mom PTSD and resentment.
[Note from Sarah: I really do need to write those letters to those doctors that told me NOT PANDAS. Ugh. Also, if you are ready to start Advocating for PANDAS/PANS, check out my newest series “GR8 ADVOC8 on the 8’s” for easy ideas. You can start with baby steps.]
Congratulations on your election to the Board of a children’s mental health nonprofit board in Michigan! This is very exciting! Can you tell us how that came about and what your involvement has been with that group? Other parents may wish to look for something similar in their states.
Kristen: Thank you, yes, I’m very excited about that. Well, I attended a 2-day state parent leadership training in 2011, I believe. Parents who attended that training were added to a distribution list for board positions. Many boards are required to have non-government employees on their boards. Through this I was added to a child abuse prevention board and a few years later to this children’s mental health nonprofit board. I hope our Michigan PANDAS/PANS group, Great Lakes Pediatric Autoimmune Encephalitis Association, will be able to partner with them at some point.
You are very active as a PANDAS/PANS Advocate. You have the Michigan support group on Facebook and in-person. You serve on Boards. You attend AAP state conferences. Why? What is it that drives your advocacy and awareness efforts? What keeps you inspired?
Kristen: Again, the thought of another family suffering like we did is intolerable to me. My initial burst of PANS’ Mom enthusiasm drove much of what I started and now I feel like I’m now trying to scale back my level of involvement to a degree that is manageable for me and my family and just keep the momentum going. As I said above, I now try to focus on efforts that will make the biggest impact with the least amount of day-to-day effort. So I focus on our Michigan support group, maintain a recommended doctor list in our group which is an easy way to inform new families. I’m open to assisting with nationwide efforts, too, as time allows. The board meetings are once every quarter and the MIAAP 2-day conferences are once a year. What inspires me and keeps me going is the camaraderie among PANS parents and the desire to pay it forward – the support groups were my LIFELINE since I found them. Also, the science inspires and fascinates me. Our PANS providers and researchers are brilliant and are truly on the cutting edge of neuro-immunology. There’s history in the making going on here.
How are your boys doing now? Are there any treatments that you feel have been the most effective for your sons?
Kristen: Both my boys are doing very well. They still have flares. My younger son has joint pain from CDC+ Lyme and possibly due to a connective tissue disorder, as well. My older son has residual issues like difficulty focusing and we very recently found out he has vision issues – Convergence Insufficiency and Vertical Heterophoria, which his PANS Neurologist sees a lot with his PANS and traumatic brain injury patients.
As far as treatments, the biggies for my older son (strep and bartonella triggered) was high-dose long-term antibiotics (Biaxin, Rifampin for Bartonella and Cefdinir for Sinusitis), tonsilloadenoidectomy, Low-Dose Naltrexone, Balloon Sinuplasty/Ethmoidectomy (sinus surgery). After a sinus infection in 2014, my older son developed periodic catatonia due to brain inflammation which responded to 9 monthly neuro/PANS doses of IVIG and Tri-Amino (L-Arginine/Citruline/L-Lysine) really helped with what I concluded must have been a build up of ammonia due to bacterial die-off. Coartem for suspected Babesia. He also has homozygous C677T MTHFR so he takes Leucovorin.
Shilajit (an Ayurvedian treatment) has helped with hyperactivity. I’m very hopeful that his bifocals with prism lenses for his Convergence Insufficiency/Vertical Heterophoria that are on order will greatly help with his schoolwork, frontal headaches and dizziness.
My younger Lyme-triggered son’s most helpful treatments were an adenoidectomy (no strep titers so no tonsillectomy, per our ENT), Azithromycin for Lyme and then later Biaxin and Rifampin for suspected Bartonella. SAM-e has helped his joint pain. Sarsparilla has been helpful, too.
Please complete this sentence: PANDAS Sucks because….
Kristen: Pandas Sucks because…nobody brings you casseroles. Instead, we’re ignored and not believed, our children labeled as naughty.
Yes! On that last one, PANDAS Sucks for so many reasons, but that is a very good one and very valid. Our kids are sick, but folks see the behaviors and misunderstand. Sometimes this continues to happen even after you have explained all about PANDAS/PANS. Ugh.
Thanks so much to Kristen for sharing her story! I really have admired her tenacity to fight for her boys (and herself!) and get the medical care she knew was needed. It’s been an uphill climb, but Kristen is paving a path for us all in all the work she does. So very inspiring!
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.