BOOK GIVEAWAY: PANDAS and PANS in School Settings

I am happy to announce a BOOK GIVEAWAY for PANDAS Sucks readers!!!

As one of the Contributors to the book PANDAS and PANS in School Settings: A Handbook for Educators (edited by Patricia Rice Doran), I was able to set up a Book Giveaway through the book publisher.

ONE person will win a copy of the book PANDAS and PANS in School Settings. The book includes important information about PANDAS and PANS for educators. Stories from the perspectives of parents and educational professionals. There’s a medical history of PANDAS/PANS. It has good considerations and tips for collaborative planning, special practices, and lists of various accommodations for PANDAS/PANS students. Teachers will even find a PANDAS/PANS Quick Facts section. The 261-page paperback book has a retail value of $24.95  and is full of information that YOU can use for your child’s school career. This book can help educate more than just teachers too, so don’t get hung up on the “School Settings’ part of the book’s title.

HOW TO WIN THE BOOK:

There are 4 ways to enter the Book Giveaway of PANDAS and PANS in School Settings:

1. Like and Comment on this Book Giveaway Blog Post at the bottom of this page.
2. Like and Comment on this Book Giveaway Blog Post on the PANDAS Sucks Facebook Page. Be sure to Like the Page too!
3. Like/Heart and Comment on the Book Giveaway Post on the PANDAS Sucks Instagram Account. Be sure to follow the PANDAS Sucks Instagram Account too.
4. Submit a “PANDAS Sucks Because…” reason by clicking here and/or submit a “PANDAS Silver Lining” you’ve found by clicking here.

The Book Giveaway will run from September 18 – September 24. ONE winner will be chosen at random from a pool of all entry methods. Participants may have more than one entry included based on how many of the above actions they take. Winner agrees to have his/her name published on the PANDAS Sucks web site and social media accounts. The winner will receive the book directly from the book publisher. If you have questions, message me here.

I have read this book (and not just my contribution either LOL! 😉 ), and I highly recommend it. I’m homeschooling this year, but if Jesse were in school, I would definitely be gifting this PANDAS and PANS in School Settings all over the place. I will still probably send a copy of it to Jesse’s previous Montessori school to have on hand. But even as a homeschooler, I found good tips to use and points that I will need to keep in mind over this school year. Oh! Be sure to SHARE this giveaway on your social media accounts so your friends can play too. If you want to go ahead and order copies, you can click  here or here.

For your current reading pleasure, here’s my Contribution to the book: Strep and Behavior Changes: Jesse’s Story. This story is included in Chapter Two: Parent and Family Voices: Perspectives on PANDAS/PANS.  (This full excerpt appears with permission from the book publisher, Jessica Kingsley Publishers (www.jkp.com). ”

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Strep and behavior changes: Jesse’s story by Sarah Jane Alleman

“I’m done dealing with him. I’m done…done.”

Those were the first words my son Jesse’s kindergarten teacher said at yet another meeting about his behavior. It was the beginning of May, and there was still about a month left of school, but his teacher was done dealing with him? There had already been countless meetings and communications in the past few months, but this was by far the most contentious. I thought we were going to be discussing how he could earn back outdoor recess, which had been taken away from him a few days earlier. Let me repeat that…my kindergarten son was no longer allowed to go outside for recess due to his behavior. But now, with his teacher being “done dealing with him,” I suddenly had one goal: to keep my son from being suspended from kindergarten. 

Jesse began his first year of school with much excitement. But during the second semester, his behavior changed drastically, with outbursts and a poor attitude in the classroom. Art seemed particularly difficult, and there were times I would go to the school to sit in the office while he attended that class. Physical Education was also a challenge for him. There were also various emails from his teacher, many notes in his daily planner, visits with the school counselor, and various sticker charts with rewards that never quite worked.  I would also come to the school for any special events and went on field trips. I had looked back over the daily planner his teacher used to report how he had done in school to be sure I was not imagining how uneventful the first semester had been, and he really had done well in school up until February 2010. In fact, his performance during the beginning of the year had qualified him for the Talent Pool, a precursor to the school’s gifted program.

Jesse was exhibiting behaviors at school and at home. We’d see 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. Several times that spring, I was called to pick him up from school. When I would arrive, he would be in clear distress and panicked, surrounded by exasperated adults. In hindsight, and knowing that my son’s brain was being affected by PANDAS, it’s amazing that we did not see even more issues.

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 help for him. During that second semester, there had been so many school meetings and appointments with doctors and consults with specialists in just a few months. 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 through May of 2010 to discuss behaviors and to rule out diabetes, anemia, and various other possible issues that could have been causing the behaviors. We met with the doctor who had removed his tonsils and adenoids a few years earlier and discussed allergies. We had an Occupational Therapy (OT) evaluation and attended OT sessions.  We saw two psychologists at the time and did screenings for ADHD and Asperger Syndrome…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 did not seem to fit, we were using it to request a 504 plan for special accommodations.

It was soon after that contentious school meeting that I found PANDAS. It was the middle of the night, and I couldn’t sleep due to my worry over my son’s school issues. What had happened? What had changed? What caused his strange behaviors? I suddenly remembered a strep infection he had at the end of December 2009 and how he was different by the end of January. I got up and Googled “strep and behavior changes” and found PANDAS. I sobbed, sitting there in my pajamas as I watched a video of the doctor who helped discover PANDAS, as she described exactly what was happening to my son.

The next morning, I called my pediatrician’s office thinking I had found the answer. PANDAS would explain why my son’s behaviors had changed so much after a strep infection, and it would explain all of the problems he was having. I explained my findings to a nurse and waited all day for the doctor to call me back, only to be told that it was not PANDAS for reasons that I know now were inaccurate. I was given the name of a doctor for a psychiatric referral and encouraged to get a prescription for SSRIs for my six-year-old. I considered making an appointment, but my gut told me that this was more than a mental health issue and something medical had caused my son to change. I had already looked up “brain tumor” on the internet to see if there were bigger issues that nobody could see. I wondered if my son was going to die before anyone was willing to figure out what was wrong with him.

The school issues continued with more and more complaints from the kindergarten teacher. My son never did get outdoor recess back, and he was put in isolation in the classroom with his desk away from all the other children. We ended the year with notes from our doctor allowing us to send Jesse only half-days. By the last day of school, I could hardly look at or talk to the teacher or principal, and I had been a Room Mom when the year began! Years later, I still have trouble driving by our neighborhood elementary school due to the awfulness we experienced during my son’s kindergarten year—I often take the back roads instead.

Over the summer, Jesse showed improvement as his anxiety levels lowered and exposure to illnesses decreased. We assumed that school had been a big part of the issue and still do believe there was a lot of stress in that environment. My husband and I decided that we would not be sending my son back to public school for first grade, and we applied to a Montessori school where we were wait-listed. I would homeschool until a spot became available at the private school.

At the end of August, Jesse caught what looked like a cold. In the next weeks (just as I was starting to homeschool), he started a vocal tic. Then he had a breathing tic. Then he developed a strange fear of his hands after watching a cartoon. Then he had a rage. I took him to the doctor with some PANDAS info in hand and asked for a strep test. Despite the change in behaviors and a positive strep test, the doctor told me again it was not PANDAS, again citing a few reasons that I now know are not valid. She gave me the name of a neurologist I could call on my own if I wanted to pursue PANDAS, and she told me to get him into the psychiatrist for SSRIs.

I sought a second opinion with a doctor at a different pediatric office. The new doctor reviewed my son’s medical file and spreadsheets I had prepared showing all of his illnesses and resulting behaviors. After listening to me describe everything that had been happening, she also told me it was not PANDAS and recommended SSRIs. We had demonstrated mental and behavioral changes with infections, but still couldn’t get a local doctor to help. Meanwhile, my son’s condition was worsening with no relief from his symptoms.

I consulted with a PANDAS specialist in a different state. After reviewing Jesse’s records and speaking with us, the PANDAS specialist told us that he was “95–100 percent sure it was PANDAS because it couldn’t be anything else.” We travelled over eight hours so my son could receive an IVIG treatment of donor antibodies to help recover his immune system and stop the PANDAS reaction. Jesse was also placed on daily antibiotics to help protect him from more infections. Over the next few years, Jesse continued to react with PANDAS symptoms to any infections/viruses and any exposures to illnesses. He did receive another follow-up IVIG treatment in 2012, almost exactly two years after his first procedure, which showed good results again.

In 2013, Jesse enrolled in Montessori school for fourth grade. It was not a perfect year, and neither was fifth grade. The exposure to bacteria and viruses did affect his mood and behavior sometimes. If he did actually get sick, he could miss weeks of school until his PANDAS symptoms subsided enough for him to be able to handle a regular school day. He continues to attend that school now. Being in a smaller, private school environment has been helpful and provides a more understanding community of teachers and administrators. Currently, he is in sixth grade, and the year is going well. Jesse even had a case of strep throat and did not exhibit any major PANDAS symptoms, which we are taking as a as a positive sign that he is in recovery.

I believe that homeschooling Jesse for three years helped in his PANDAS healing immensely because he was not as exposed to other children’s illnesses. When he was able to go back to school, being in a smaller Montessori environment meant fewer illnesses. His teachers let us know if they notice any odd behaviors, and they notify us when there are bugs going around at school so we can take precautions and monitor our son’s health. While we are not out of the woods yet as far as PANDAS symptoms, it is nearly as strange to not be dealing with them from a current infection. We are thankful that he is a good place health-wise for now though, but we are also cognizant that symptoms could still occur and so we remain vigilant.

Schools can definitely help on the front line of recognizing that a medical condition is present, since school is where children spend the bulk of their waking hours during the week. With conditions such as PANDAS/PANS, it is important that teachers understand how the symptoms can manifest at onset of the condition, as this can help speed the diagnosis of a child. Knowing how the behaviors can change over time, and wax and wane, can also help teachers provide positive accommodations for the students. It is important for schools to fully support families going through the crisis and extreme stress of PANDAS/PANS. It is devastating, and educators must realize PANDAS/PANS is a medical condition that presents with behavioral and learning issues.

Overall, our son Jesse is a funny, intelligent, spirited 11-year-old. He enjoys acting, telling jokes, writing stories, and drawing, and he hopes to be a movie actor and/or director when he is older. Over the past five years, PANDAS has robbed him of many normal aspects of his childhood. His father and I have been robbed of many normal aspects of parenthood. With PANDAS, it is difficult to even know what “normal” is anymore. Even when you have a “good” day you can’t fully enjoy it due to the knowledge that tomorrow might be very bad. Healing your child from PANDAS/PANS can take a long time, and you may never know if he is fully recovered.

Everything you go through during the PANDAS journey makes you want to help other parents that are just finding the condition and seeing wild changes in their child’s behavior. I know the desperation parents feel because I have felt it. I write a blog called PANDAS Sucks (pandassucks.com) and founded a PANDAS/PANS Support group in my state. I’ve also given presentations to teachers to help spread awareness about PANDAS/PANS so that fewer students and families have to go through what we went through when the condition hit my son. Jesse’s story is full of ups and downs, but it is a positive one. His recovery has taken a lot of time and patience, but there is always the fear that any illness could take him back into a major PANDAS exacerbation.

(c) 2016 Jessica Kingsley Publishers. Reprinted with permission. This article may not be reproduced for any other use without permission.

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I had previously blogged a bit about Jesse’s school experience with undiagnosed PANDAS here. When I wrote this school story for the book in the fall of 2015, Jesse had just gotten strep that September, which I mentioned in this blog. (He was actually diagnosed with that strep throat infection exactly one year ago today on 9/18/15…gulp!) Then he got strep again in December. Then he had a close proximity strep exposure. Our PANDAS Specialist called that Three Strikes of Strep, and it put my son out. Jesse went into a major PANDAS exacerbation, which was my greatest fear and literally the ending thought of my story in the book. He received an IVIG in April, which I still need to blog more about his treatment, and Jesse missed over 8 weeks of school last spring. Sigh. I’m homeschooling for 7th grade, which is proving to be a good decision so far despite me and Jesse being so much alike and butting heads a lot. LOL! I will write more about School when I draw the winner and provide an update to Jesse’s School Story. I will say that right now, Jesse is doing very well. He’s healthy and happy and living his life. We’re not out of the woods, and there’s still stuff (there’s always stuff, eh? ugh!). But I have my kid back for now, and that’s priceless. 🙂

It was an honor to be asked by Patricia “Patty” Rice Doran to write a parent story for her book. I join other PANDAS Parents, Providers, and Professionals like Patty Doran, Diana Pohlman, , Laura Cook, Amy Cornelius, Mary Crombez, Megan DeRitter, Darlene Fewster, Melissa Giampietro Candace Hoppin, Amy Mazur, Wendy Nawara, Kathleen Stein, Janice Tona, Dr. Margo Thienemann, and a few other Anonymous writers. It’s quite a cool group of folks with whom to share a common denominator!

Don’t forget to enter the Book Giveaway. Can’t wait to see if you WIN the book or already know you’re going to need multiple copies? You can purchase the book here or here.

If you DO WIN the Giveaway, you can keep the PANDAS/PANS book for yourself or gift it lovingly to your child’s teacher. Or you might wave it around at the next awful school meeting whereby it may “slip” from your hand and hit a teacher or other school official in the face. Accidents do happen, and books are slippery little suckers sometimes. BUT I highly recommend wrapping the book and gifting it to a teacher.  (NOTE: you are responsible for your own bail or bond. PANDAS Sucks/Sarah Jane Alleman will assume no responsibility for any unlawful activities done involving the book. Gift the lit…don’t use it to hit. 🙂 )

GOOD LUCK to everyone who enters the Book Giveaway. You’re all WINNERS to me even if you don’t win the book. <3

Love,

 

 

 

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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. Also see PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.

*some affliate links included.

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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