Never Ever Give Up: Jacqueline Lembesis’ PANDAS Story

Never Ever Give Up: Jacqueline Lembesis’ PANDAS Story

Hi, my name is Jackie, and I am 22 years old. Growing up, I was a really happy, healthy child. I loved musical theatre and grew up taking more dance classes than I could count. I basically lived at our local dance studio, taking classes during the week and preparing for performances on the weekend. I also really enjoyed school. Language Arts was always my favorite class, and I loved to play this game where I tried to see how small I could write while still being able to read it.

What’s more, I have three brothers, and Halloween was always a super special holiday for us because one of my older brothers loved it more than anything. He enjoyed going to the Halloween stores and planning what he wanted to dress up as that year, adding a new mask to his collection. He also loved to bring multiple outfits with him when we went trick-or-treating so that if there was a house giving away king-size candies or ran out of candy and started giving out money, he could go back multiple times. I loved this, too, because I always went home with a pillowcase full of candy. The year that PANS/PANDAS struck was no exception. We had planned our costumes, created plans, and were getting ready for the big day when, out of nowhere, my life changed forever.   

In October of 6^th grade, when I was 11 years old, I developed what we thought was a regular cold and strep infection. Little did we know this simple strep infection was soon going to throw us on an adventure we never wanted to be a part of. I stayed home from school for about a week and was completely lethargic, with a near paraplegic gate, had incredible nerve and joint pain, and experienced age regression and separation anxiety. My body visibly shook and trembled all the time, and I was unable to walk, write, and feed myself. My mom and pediatrician were frightened by what was going on and were searching for answers. I was bounced around from emergency room to emergency room until my white blood count was so elevated that I had to be admitted. After several days and many tests later, the specialists were still unable to determine what was going on with me. I was given the diagnosis of Pain Amplification Syndrome, or the pediatric form of Fibromyalgia, and sent home. For about 6 months, I went to intensive physical and occupational therapy to regain the fine and gross motor skills necessary to participate in my care independently.

About two years later, when I was near the latter part of 8^th grade, I was in remission. I was finally able to participate in all the activities I wanted to, could walk around campus without having to leave early, and no longer had or experienced much age regression or separation anxiety. I had some joint and nerve pain, but nothing near the extent of what it was before. It seemed like we were finally out of the woods, but little did we know that the adventure was just beginning.

Towards the end of my senior year in high school, I had a recurrence of symptoms, but they presented themselves differently from before. In addition to the nerve and joint pain I was already experiencing, I had tics, OCD, ARFID, age regression, separation anxiety, noise and light sensitivity, dilated pupils, nonepileptic seizures, and difficulty sleeping, among others. I knew something was wrong, so I began to look up what this could mean. I asked my neurologist if I could have PANDAS, and he said it was possible, but we would need to run a Cunningham Panel, which can be expensive, among other tests, to be sure. My Cunningham Panel came back elevated in several areas, pointing us to our diagnoses of PANDAS. I started on a Medrol Dose Pack, which almost immediately brought me back to my previous baseline. My doctor and mom recall how shocking it was to see. From there, I did an EEG, sleep study, long-term EEG, and several blood tests. All results indicated PANDAS.

I was 19 years old, in my Freshman year at CSUF, when I got my official diagnosis of PANDAS.

Because I could not stay on the steroid long-term, we began looking into other solutions. My doctor wanted me on IVIG, but the insurance wouldn’t pay for it. Due to this, we began to look into other solutions while we continued to appeal the insurance. I began other medications in hopes of reducing inflammation and the occurrence of strep. However, there was already so much inflammation in my brain that my symptoms continued to get really severe about every month, landing me in the emergency department for a high dose of intravenous steroids and other medications. This was primarily due to my ARFID and OCD being heightened, leading me to the inability to eat and drink for about a week. After a high dose of intravenous steroids, I was usually able to eat and drink again fairly quickly.

My first dose of IVIG was in the hospital. We began paying for IVIG for infusions about every 6 weeks, but since we were still fighting the insurance, the infusions were often not consistent, which meant I was still going to the emergency department every 4 weeks. My neurologist recommended a tonsillectomy as a preventative measure since a lot of the infection was being held in my tonsils. We saw some improvements after this procedure, improvements as beneficial as hypnotherapy and psychology. After some time, I got a port-a-cath placed to help with my infusions and intravenous medications, and shortly after this, my infusions got approved by the insurance. Currently, I receive IVIG infusions every 4 weeks, which has lowered my symptoms significantly to the point where they are easily controlled and regulated.

The battle with PANDAS is no joke, but there is hope. Throughout my journey, my mantra has been Never Ever Give Up. I am a fighter, a warrior, like all those with PANS/PANDAS. I have found fun ways to help me throughout my journey. For every infusion, I decorate my infusion center room with yellow butterflies, my port and IV, stuffed animals, and a wreath I made after one of my surgeries. I also wear one of my Brave Gowns and bring things to paint as well. I have also learned that you can revamp IVIG bottles into painted masterpieces or sculptures, which has been really fun, too.

Moreover, there is hope for the future. I graduated summa cum laude with a 4.0 GPA from California State University, Fullerton, with my BS in Child and Adolescent Development in May 2024, where I was the commencement speaker. I am now in my 1^st year at the University of Minnesota, earning my MA in Applied Child and Adolescent Development, with a Concentration in Child Life, where I hope to graduate in May 2026. I am studying to be a Child Life Specialist to help other children and families the same way I was supported throughout my PANDAS journey these past 10 years.

Additionally, I wrote the first book in my children’s book series, Lyla and Pickles, entitled Lyla and Pickles’ Guide to PANDAS, which can be found on Amazon. I hope to help other PANDAS warriors and families remember to Never Give Up, as this is only a small piece of our story.     

 

Lyla and Pickles’ Guide to PANDAS