I spent the first two days of this week talking to special education teachers in my state about PANDAS/PANS. Actually, teachers were told that they should visit the table that another awesome PANDAS Mom and I had at this conference. (Hi L.B.!) We definitely blew a lot of minds describing PANDAS, how teachers might see it manifest at school, and that strep was the culprit. We watched light bulbs go off as teachers thought about students at their schools. A few people even texted messages about PANDAS while standing at our booth. We may be presenters at the conference next year and also received invites to talk to a few other groups. Wowza! 🙂
In getting ready for the conference, I designed materials to hand out, made copies, and bought supplies. I also thought A LOT about when PANDAS hit during the second part of my son’s kindergarten year. He’d had strep throat at the end of December 2009, and by the end of January my son was changing. His behavior really took a nose dive over the next few months and that led to a lot of meetings, notes, emails and stress about school. Jesse’s PANDAS was undiagnosed at the time, but I was doing everything I could do to figure out what was happening to my child. Thankfully, he was finally diagnosed by a PANDAS Specialist in the fall of 2010 and has received successful treatment. Our public school experiences led me to homeschool for the next three years. This turned out to be a good decision because homeschooling reduced his exposure to illnesses and helped his immune system. I will say that homeschooling a PANDAS child has certain challenges, but the reduction of public school stress was priceless.
Currently, my son is back in school and attends fourth grade at a private Montessori school. There have been some blips here and there, but overall, things are going well. Last week, he brought his school pictures home, which brought tears to my eyes. Something so normal and ordinary as school pictures is a HUGE milestone for my son. Bravo Jesse!
But here’s the thing. I never went back and told his old school what had happened…that it was a medical condition called PANDAS that was causing his behaviors. I always meant to do it but never did. Hell, I still can’t even drive past that elementary school and take the back streets instead. The idea of writing a letter to the school…EEK! But the fact that I talked to so many teachers this week and told them about PANDAS made it feel hypocritical that I’d never told my son’s old school. (Two years of therapy has also helped me feel strong enough to tell the school too.)
I’d heard through the grapevine that school personnel were told about PANDAS by another parent that knew me, but I needed to tell them the story.
Here is the letter to the school principal that I wrote today. Copies are also going to the vice principal, school counselor, school director, a school board member, and the superintendent. (Note: the school, names, and other identifiers have been removed.)
(Warning: Very long, detailed letter ahead!!! I am definitely NOT known for my brevity. You may wanna refresh your beverage right now. Ha Ha.)
November 26, 2013
My name is Sarah…. My son Jesse was enrolled in kindergarten at [your school] for the 2009-2010 school year. You may remember me from my many hours of volunteering at the school as a Room Parent and a PTO member. We also attended several meetings together because Jesse’s behavior at school declined sharply during the second semester. I am writing this letter to inform you of the MEDICAL condition that caused Jesse’s issues. My son was very sick with an undiagnosed, invisible illness while he was enrolled at your school. It is my understanding that you may have already heard this from a kind parent that gave you part of the story. I want to tell you the story…I need to tell you. Honestly, this is not an easy letter to write, but it is necessary.
At the end of December 2009, Jesse contracted a strep throat infection that caused him to develop a condition called PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. PANDAS is similar to Rheumatic Fever, which is where strep antibodies attack the heart. In PANDAS, an autoimmune reaction develops where antibodies cross the blood brain barrier and attack the basal ganglia of the brain. The basal ganglia is basically the conductor of the body and controls emotions, behaviors, and some movement. My son’s brain was inflamed/swollen, and he had what may be considered a type of autoimmune encephalitis. His changes in behaviors at school (and at home) began about 4-6 weeks after that infection, and the changes were startling and uncharacteristic for my son. In hindsight and knowing that his brain was affected, it’s surprising we didn’t have even more issues. His behaviors were in accordance with the symptoms of PANDAS: OCD (including perfectionism and “just right” tendencies), urinary frequency, fight or flight responses, hallucinations, short-term memory problems, ADHD/impulsivity, oppositional behavior, emotional lability, irritability, rages/tantrums, personality changes, school changes, age regression, sensory issues, anxiety (including separation anxiety), sleep disturbances, decline in academic skills, and more.
Children with PANDAS can react within hours of being exposed to strep (and other illnesses/factors can also trigger reactions). This may even explain how Jesse could have fine morning and a marked decline in the afternoon. Kids may not actually get the infection when they are exposed, but once the immune reaction is triggered, then symptoms may occur. Many children with PANDAS also tend to be bright, and Jesse was participating in the Talent Pool, the pre-cursor to the gifted program at your school, based on his performance during first semester.
I had found PANDAS as an explanation on May 10, 2010, but Jesse’s doctor disagreed with me at the time. I was being encouraged to see a psychiatrist and put my child on psychotropic drugs, which are actually contra-indicated in children with PANDAS. Once the school year was finished, Jesse improved over the summer as his anxiety levels lowered and exposure to illnesses decreased. He got sick at the end of August and some of his behaviors began returning in the next weeks. But in September 2010, I was again told by his doctor that it was NOT PANDAS despite a positive strep infection and clear symptom presentation. After meeting with a second opinion doctor and being told again that it was NOT PANDAS, I consulted with a PANDAS Specialist in [out-of-state city]. After reviewing Jesse’s records and speaking with us, the PANDAS Specialist told us that he was “95-100% sure it was PANDAS because it couldn’t be anything else”. We traveled to [out-of-state city], and my son received an IVIG treatment of donor antibodies to help recover his immune system and stop the PANDAS reaction. He has been on daily antibiotics for over three years and received a follow up IVIG treatment last year. Currently, Jesse is doing well and is enrolled in fourth grade at a private school after three years of homeschooling.
I do understand that none of us knew exactly what was happening to Jesse as his behavior deteriorated. As his mother, I was doing everything I could do to find him help and shared all of this information with the school. I spoke to his teacher about some possible “bullying” in the classroom. I consulted with the school counselor and gifted teacher for their insights. We saw the eye doctor, and his vision was 20/20. We saw his pediatrician EIGHT times from January – May 2010 to discuss behaviors and rule out various infections/sick visits. We had an Occupational Therapy evaluation and attended OT sessions. We saw two psychologists at the time and did screenings for ADHD and Asperger’s…he had neither of those conditions. By the end of the year, we had received an “Anxiety-Not Otherwise Specified” diagnosis for Jesse, and even though it didn’t seem to really fit either, we were using it to request a 504 plan. Also, after I found out that PANDAS may be an explanation, I started asking about possible strep infections in the classroom and was told at least once that strep had been present.
While at your school, I attended several meetings to “discuss” Jesse’s behavior with various other personnel present. At one of these meetings (5/7/10), his teacher, began the meeting by saying “I’m done dealing with him…I’m done…done.” (Note: My goal at that point became to keep my kindergartener from being suspended before school ended.) Art class seemed particularly difficult for Jesse, and for several weeks, I came to the school to sit in the office while he attended art class. There were also various emails from his teacher, many notes from his teacher in his daily planner, visits with the school counselor, and various sticker charts with rewards. I would also come to the school for special events and go on field trips.
There were several times I was called to come get Jesse because he was prone to meltdowns while his medical condition was undiagnosed. On 4/13/10, I was called to the school near dismissal time because there had been an incident with Jesse at a late day recess. When I walked down the hallway, [a school official] was holding him from behind in a bear hug, and you were holding his legs down while all the other students streamed past us on their way to the bus. I was not immediately able to take my son either and had to sit there for a few minutes until you would let him come to me. Once he was on my lap and in my arms, it took me nearly half an hour to calm him so we could leave the school to go home. And on 4/29/10, I was called to come get Jesse because he wouldn’t come in from recess. I had literally been at home Googling “brain tumor” when that call was received. As I carried my raging son out of the school and you were helping me carry his items, I told you that I thought it was “something big—big—brain big”. You replied, “Well, it’s something” with a tone that you may not have intended, but the message was received that my son was definitely a problem child. I got home from the school and collapsed on my kitchen floor and called my sister at work. I was sobbing that my son probably had a brain tumor, and my husband had serious health problems, and both of them would probably die, and I’d be all alone.
Jesse lost many minutes of recess during this time, and he was required to “walk the wall” due to his behavior issues and various “color changes” he received on his chart. You may recall that outdoor recess privileges were revoked from Jesse on 5/5/10, and he was required to stay indoors. I was hoping that recess could be reinstated since denying my six-year-old outdoor physical activity was not a sound long-term solution. You wrote me on 5/25/10 with the following message: “Would you be available at recess time to here and help ensure that Jesse comes back into the building when asked to do so? The last time he had recess he had to be carried back into the building.” He was also put in isolation in the room on 5/12/10, with his desk facing away from all the students and up by the teacher’s desk. And during the last few weeks of school, it was necessary to get doctor’s notes that allowed me to pick Jesse up early versus attending full days.
I will also cite another instance where my husband was in the hospital overnight for a serious condition. I informed the teacher on 4/21/10 via email that this had happened and that Jesse was worried (he had asked me if his dad was going to die). Despite this vulnerable condition, my son was still punished that day with his color being turned to red (losing 10 minutes of recess the next day) versus given the TLC that I expected him to receive and “extra hugs” I had requested.
I wanted to let you know that after our kindergarten experience, rather than stay in the public school environment, I chose to homeschool my son for three years. This was a good decision because it did reduce his exposure to infections and helped strengthen his immune system. Again, I am cognizant that school personnel were not aware either that my son’s brain was swollen, but the fact that “behavior problem” did basically seem to be the default conclusion caused me pain as I searched for the root cause because I knew there was one. My son’s first half of kindergarten had been mostly without incident, and I have a color-coded chart showing all of his “blue” days. And even during what we know now was his first major PANDAS exacerbation, he would have very good days. That is also a hallmark of PANDAS since behaviors can wax and wane, which makes it seem they are choosing to be defiant since sometimes things are fine. The behaviors of PANDAS are not a choice, and these children’s brains are under attack by their own bodies.
Bad memories from our time at your school nearly three years ago still keep me from even being able to drive past your elementary without remembering events from that spring…I usually take a different route. For a long time, even seeing a school bus was disturbing to me. I am telling you this because the school experience has such an impact on a family. As school personnel, your treatment of a family in such a crisis is important. I will say at the beginning of the problems, there was some understanding, but by the end of the year, I wasn’t really speaking to the teacher or any school personnel (and I was a Room Parent). I certainly wasn’t doing any volunteer work to help out at the school either. My main concern was my child’s safety, and I worried about him every single day once all of the issues started. In fact, it was a sleepless night worrying about Jesse that led me to connect “strep, behavior changes” in a Google search to even find PANDAS in the first place.
I am writing this letter now because I spent the past two days informing teachers about PANDAS at a state conference. This was a great opportunity to spread awareness, and I wanted to be sure I also informed you of PANDAS. It helps to set the record straight about my son and his time at your school too. And for years, I’ve felt guilt over any child with possible PANDAS that has come through your school or any county school. Your knowledge of PANDAS now could be instrumental in helping families find relief and recovery since many doctors do not mention PANDAS as a possibility (mine didn’t).
I will be working to build awareness of PANDAS in the state and am involved in other efforts to assist parents everywhere in getting help for their children. I will recommend PANDAS Network (www.pandasnetwork.org) as a very good resource for more information about PANDAS. I am also willing to help on a district-wide level to ensure that all school personnel are aware of PANDAS and how it can affect a child. It would actually be my pleasure to do that for the families in our county.
*Note: PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome and includes infectious triggersother than strep (mycoplasma pneumonia/walking pneumonia, Lyme, viruses, environmental factors, and allergens) that cause a reaction with neuropsychiatric symptoms.
Whew! This letter was incredibly difficult to write (and edit–obviously), but it was necessary. After telling so many other teachers in the state about PANDAS, I felt I had to tell his old school too. And it also helps me set the record straight about WHY my son was acting the way he acted during kindergarten. Uhhh…it’s totally understandable that brain inflammation/brain swelling/a possible type of encephalitis will make you behave differently. Damn PANDAS!
I’m not sure that I feel great relief in telling the school that it was PANDAS and not a behavior problem. But I have written the letter that I have been meaning to write for over three years. Someday, I’m going to also write to all those doctors that told me “No…it’s NOT PANDAS” and tell them “YES…IT WAS PANDAS!”. Those letters will be written soon.
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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 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, 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.
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