Through Ella’s eyes: a child’s perspective on her journey with PANDAS 

My name is Ella and I was diagnosed with PANDAS at age 13, now 15. Before PANDAS I was a four-sport athlete (basketball being my favorite), I loved hanging out with friends and family, I was doing good in school, and I was your normal teenager. 

All my life I’ve had it pretty easy. I was your average blonde-haired, blue-eyed girl. I thought life was gonna be so easy and fun and nothing was gonna get in the way of that. That’s until my dreams and make believe thoughts did not become a reality for me. I had no clue what it was like to have a life with an illness until I met PANDAS and now I have no clue what it’s like to not have an illness. One of the worst things about PANDAS is that we can be totally fine one second and then boom we’re in a flare. When a child like me has PANDAS or PANS, our brain is attacked by antibodies. When we’re exposed to germs or infections, we’re at risk of getting sick and flaring. 

Here are some of the many things I struggle with daily: I struggle with counting how many steps I take and I can’t stop; I want to but it’s a compulsion and I’ve been doing it since I was seven. I have to have literally everything perfect until something’s the way I want it. I tap my toes together three times each. I flip the lights on and off three times each when leaving and entering a room. I turn the shower on and off three times when showering. I have to have ALL lights on or off if I’m in a room. When texting, I have to have my sentences perfect and it may take a while for me to respond. I don’t like eating fruit cause I’m paranoid that there’s bugs or dirt in it, so I have to have it blended to also avoid the texture. I am very picky about textures of blankets and clothes that I wear. I experience memory problems and I can’t remember my childhood or even things I just did an hour ago or what I did yesterday. I experience heat flares and I’m always hot. I get angry at the littlest things and I struggle with emotions. Again those are just some of the MANY symptoms I experience every single day. 

In September of 2018, at the start of the school year, I got strep once again. Little did I know life would never be the same again. I was having learning problems, anxiety, panic attacks, ADHD, OCD, hallucinations, separation anxiety, tics, agoraphobia, and sooo much more. A few weeks after having strep, I started to experience anxiety like never before, I was refusing to go to school and I was scared to leave the house. It got so bad and so difficult for my mom to get me to school that she needed an officer to help her. I was embarrassed and I felt extremely depressed because I had never had anything like this ever happen to me. Later on, since I couldn’t attend school, we decided to try me being home bound and visit a tutor instead. It only lasted two months until I completely was terrified to leave the house, so I had to drop school altogether. 

Never in my life would I imagine me becoming suicidal. I wanted so badly to end my life cause I was going through everything you could imagine. I hated who I had become. No antidepressants were helping and nothing was working. I lost all hope. 

My friend’s mom of a child with PANDAS got a call from my mom explaining to her what had been happening with me. She had known right away that I had PANDAS. After a major tic flare, we scheduled an appointment with their PANDAS specialist to get some answers. On January 24th, 2019, we finally got some answers and I was diagnosed with PANDAS. I had many vials of blood taken to search for a history of strep. Blood test results come back and he finds not only strep but pneumonia that I had just a few weeks before I had my blood taken, which explains why I raged that week while I had it. Little did I know that that was just the beginning of my PANDAS journey. I developed major agoraphobia and I was so afraid to leave the house. I was becoming irritable, moody, anxious, and having mood swings. 

Sadly I still hadn’t left the house in six months and antibiotics were not helping me. I was raging, twitching, and still experiencing OCD, ADHD, and panic attacks. My doctor decided I needed IVIG treatment as a stronger alternative to help me. Insurance denied covering my treatment, so a go fund me was started by my best friend’s mom. In just two days, we raised enough for one treatment and I was ecstatic. Not only was a go fund me started but my friend sold her hog at our county fair and gave all the funds to me and my mom’s friend’s son, who is an NHL hockey player, donated enough money for one treatment and I was so overwhelmed with tears and joy. I finally had hope that I was gonna get better. 

After my first IVIG in August of 2019, we later decided that it would be a good idea for me to get a service dog. Her name is Zara and I could go on and on about her. She lies on my chest when I have anxiety attacks to calm me down and we’re working on other tasks to help me with my other symptoms. Zara has filled a hole in my heart that I will forever be grateful for. 

Some new symptoms creeped around and I began having hallucinations and I was hearing voices in my head every single day. My voices would try to tell me to jump out the window or it was like someone put a microphone in the back of my head and would whisper things to try to get me to do something I shouldn’t. I was scared to tell my mom though, because I was paranoid that she would freak out if I told her what they were telling me to do. 

Rages are something I struggle with the most. I have anger issues and I get upset at just about everything. It’s sad for my parents to watch me go through a rage and watch me scream, throw things, and even worse cuss impulsively. I’m not one to swear out loud cause I’ve always been a genuine person but ever since PANDAS, when I rage, I swear a lot out loud. Guilt creeps in afterward and I feel like a bad person after I swear during a rage cause I’m not like that but it’s PANDAS attacking my brain. 

In March 2020, I had my second IVIG and we took Zara, my service dog with me. It took many hours for me to be able to leave the house and I raged big time that morning. After my second IVIG, my rages got worse. Yes, I was smiling and joking more finally, but mentally and physically, I was drained. I was having knee pain, migraines, and so many other physical symptoms still. My hallucinations got worse, so I finally told my mom cause I was so done with them. We called my PANDAS specialist and I finally got on an antipsychotic to help. 

It is now June 2020 and I still am going through a lot. I still haven’t left the house since my 2nd IVIG in March and it sucks. I miss my friends, family and overall having a normal life. I’ve used about everything in the book from installing an air defuser in my room to help with mold, cooling sheets to help me when I’m overheated; gluten free diet, a weighted blanket to help with anxiety, and even installing a fan in my ceiling that I have not yet turned off since we installed it cause that’s just how overheated I get. Not only do I get overheated but I get very cold to where my skin turns pink and purple and it gets all blotchy. We’re working on hopefully getting me tested for Bartonella and retested for Lyme. I’m on a total of 20 medications and supplements that keep me somewhat going. Every day I struggle with up and down emotions of being depressed and then suddenly having so much energy that I scream and talk non stop. When I’m anxious, I pull out my hair and bite the inside of my cheek that is now scared or I bounce my legs and recheck things. As a coping method to relieve stress, I exercise. Feeling anxious? I exercise. Feeling a flare or rage coming? I exercise. It made my joint pain worse, but mentally it’s made me feel better and helps me escape life. 

As a person who has gone through a lot, I’ve gained some confidence. I used to be a shy person that never stood up for myself. Now I don’t take crap from anyone and you can judge me all you want cause I learned that I’ve been through a lot and come a long way, so why should I let someone get in the way of that? When you’re forced to experience such trauma at a young age because you’ve survived so much, you almost already learn to survive anything and anyone. I’m now the type of person that will call you out and put you in your place if your hurting someone’s feelings cause I truly know what it’s like to absolutely feel worthless and I wouldn’t want anyone else to feel like that. 

With PANDAS, you never know when we’ll flare, so you kinda have to go with the flow and flares happen when they happen. PANDAS has been very traumatizing for me and I learned that everything happens for a reason. I am a believer in God and I try to always stay hopeful that one day I will be thriving again. I may have PANDAS but it doesn’t have me. This illness is real, heartbreaking, and extremely devastating. I learned that the more hurtful and doubtful things you say to yourself, the more you believe them, so make your mind a healthy place to be. I may have a disabling illness but I will live and thrive with myself and I will hold my head high and learn to live with no fear of the future. I’m very scared that I will not succeed due to my illness but whatever happens happens. I truly do believe that I will do something good with my life and I will spread awareness about PANDAS and teach people that things do get better. Things have not yet gotten better for me but I am still here battling my own mind, battling PANDAS, and learning that positivity is key. That alone right there, I know, is truly amazing. I want to write my own book about my experience with PANDAS and my struggle with mental health way in the future so that right there is something positive that will come out of this nightmare, let alone writing this story. I may be struggling severely and will always have PANDAS but I will succeed at life and live it to my fullest that I possibly can. By sharing my open story, I hope that I’ve inspired you in some way. You may email me if you need someone to talk to or are struggling with PANDAS/PANS, I’m an open book.

 

16 comments to Through Ella’s eyes: a child’s perspective on her journey with PANDAS 

  1. Heulwen Lane
    June 23, 2020

    Hi Ella, wow ! You are amazing! I had post natal with both my children so do understand the downsides of things…., Please do write your book and remain open to your feelings, sharing them with others, so people know they are not alone and it is not an embarrassment to feel how you do. You are a fighter ! Much love xxxx

    Reply
  2. Sheryl Davis
    June 23, 2020

    Beautifully written… prayers.. god bless you…!!!

    Reply
  3. Sarah Bailey
    June 23, 2020

    My daughter (7) has had PANDAS for 3 years now and she has nearly exhausted every medical treatment there is available. Antibiotics alone didn’t work and neither has IVIG. The only thing that seems to give her relief is a high dose of steroids IV over 3 days, but the gains don’t last long after the steroids are weaned off.

    I wish you all the best, in all the world. Really I do. We’ve now decided to work on quality of life and management of symptoms rather than trying to find a cure.

    Sarah xXx

    Reply
    • Gabriella True
      June 23, 2020

      Have you met with a doctor to discuss other immunomodulatory interventions like Rituximab? Have you explored a more integrative medicine approach to look at triggers other than infections and other ways to provide inflammatory relief?

      Reply
  4. Mary Bickerstaff
    June 23, 2020

    Thank you so much for your courage and honesty! It pains me that you have to deal with this. I chose to write on Facebook about how people are too arrogant to wear masks on your family’s boat. They don’t have a clue about what you live with. They are blessed with good health, and can’t wrap their heads around not putting your father and others in danger due to stubbornness and ignorance.
    I am praying they read what you have written so well. Am trying not to swear at them when they act like sneering louts and give me stares as they depart on a private boat. Good. It’s excellent that they don’t ride your Dad’s boat right now!!
    Wishing you better health. You are certainly an inspiration!! It might be interesting to laminate a copy of what you’ve shared to place on a visible location on that lovely boat. Knowledge is power.
    Love to you and an air hug.❤️

    Reply
  5. Jennifer Hirrell
    June 23, 2020

    Thank you, Ella, for being brave enough to share your journey with all of us. My daughter is 13 now, and her PANDAS onset was at age 7. It has been a long, hard road trying to get her better. We have good moments, but like you, she’s not all the way home yet. Please write that book! The world needs to hear firsthand what you amazing kids are going through. I wish you health and happiness, sweetie 💗

    Reply
  6. Marie Sheen
    June 23, 2020

    Ella this makes me sad that you have to go through this but you will get through it. Love you sweet girl just like your mom 🥰😍😘💚💚💚💚💚

    Reply
  7. Madie Cope
    June 23, 2020

    Ella you are a constant inspiration and I love that you are always facing everything head on. Whenever I play sports or get new shoes I always put your name on them for good luck, and before I play I rub them three times 😂. I always tell myself if Ella can do it so can I and I can play hard for her. I love and miss you so much and you are already doing great things in life!! Love ya girly ❤️❤️

    Reply
  8. Darlene
    June 23, 2020

    Your story and your openness is inspiring. I hope you do write a book about PANDAS I learned more from your story about it than I have online.
    Thank you for sharing

    Reply
  9. Cindy Rodrigues
    June 24, 2020

    Please read Psalms 83:18 Talk to Jehovah call him by his name pray to Jehovah.
    Joel 2 :32 Everyone who calls on the name of Jehovah will get away safe.

    Reply
  10. Donna Minehart
    June 24, 2020

    Ella I will pray for you every day. I worked with your mom and she is a special person. I hope yo do write a book. It can help someone that has this problem to know they are not alone. You can do this with God’s help. Love and prayers.

    Reply
  11. Alliston Orr
    June 24, 2020

    Thank you for sharing your story Ella – I shared it with my DD8 and she smiled the whole time even though it’s not a happy story. She was so thankful to know there are other girls here in Ohio that share and understand her challenges. Never stop fighting! Also – I know another young teen who would love to speak with Ella. Is there a way to connect them?

    Reply
    • Gabriella True
      June 24, 2020

      Her email is in the link at the bottom of the article. And if your daughter or you want to write a story too, please let us know.

      Reply
  12. Robyn
    June 25, 2020

    You got this Ella! I can tell you are a fighter. Stay strong and keep being an inspiration for others going through your same journey. Remember it’s not a sprint but a marathon.

    Reply
  13. Marcia
    June 26, 2020

    Ella, I admire you for your honest truth about what it’s like to live with your illness. I am a pediatrician who has knowledge of PANDAS, but your account here has taught me so much more about the real deal, about what it’s like living with it. Thank you for sharing your experience. You are an amazing young woman, so strong and brave. Thanks for teaching me. You can beat this!

    Reply

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