ADHD, PANDAS and Myself: Finding the Best Version of Me

September 23, 2013

trinityOn this blog I’m known as Trinity, which is the name of the main character in one of the stories I’m writing, not my real name. As I type this, I am sitting next to five Thinking Moms, one of whom is my mother, Professor. I was inspired to write this as I am at AutismOne for the first time! I do not have autism; however, I do have ADHD and I used to have PANDAS.

The Thinking Moms who I am sitting next to were just talking about guest blogs. They currently don’t know I am writing this, as I am a bit too embarrassed to mention it to/in front of my mother, but here I go anyway:

I have never had autism. Let’s start with that. I can’t imagine the way the world looks from the perspective of an autistic person or someone with Asperger’s. But what I can say with complete and total honesty, I have recovered. But from PANDAS.

For those who don’t know what PANDAS is, it stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. A sentence I left blank till I had WiFi to Google it. To be honest, I don’t know what the doctor’s definition of PANDAS is, but in my experience PANDAS is when something tiny can set off in an explosive fit of anger. I was remarkable at keeping it under control at school, though I was known for having a short fuse. My control, unfortunately, only existed at school, and at home I would be angry almost all the time. My mother took the brunt of my anger. Something ridiculously small would happen, and I would explode. My vision would literally gain a red tint and then . . .

Nothing.

At least that’s how I remember it, or not, as the case may be. I, Trinity, would disappear and be replaced by PANDAS!Trinity, a perpetually angry girl, who hated everything and everyone. My mother would end up sending PANDAS!Trinity to my room and, after being isolated for a while (hours)  she would manage to calm down, and I would regain control over my body. Though I wouldn’t have any memory of what PANDAS!Trinity did, I would know she did something horrible, and I would blame myself as I didn’t differentiate between the two of us yet. I was so embarrassed by the thing ‘I’ had done, but didn’t remember, I would apologize with a piece of paper taped to string saying I was sorry. I would hang it over the railing and into the living room, so it would be visible from the couch. I remember many times I had difficulty getting the paper to face the right way. I didn’t even know I had PANDAS; I thought I was just a horrible person, through and through.

Then, when I was nine, my mother started treating my brother for apraxia. While doing research on that she found a description of PANDAS. This is in my mother’s chapter in The Thinking Moms’ Revolution: Autism Beyond the Spectrum. When she began treating me, the change was almost instantaneous. PANDAS!Trinity showed her face less and less, until she didn’t show up any more. (The road there was not that straight and uncomplicated, but that’s a loooooong story, and not one I’m sure I could summarize or tell properly). I was me and no one was trying to push me out of the picture.

seeing red

You have no idea what it felt like to know I wasn’t really this horrible person, I actually had some good things about me. I will probably always carry the guilt of all the things I did under the influence of PANDAS, and I had years of my life stolen away by the anger of PANDAS!Trinity, but now I can think clearly enough to make decisions and not be unreasonably angry all the time.

Once my PANDAS was completely gone, though, I continued to be affected. I suffered through this mostly alone as well, because I didn’t want to tell my parents, my brother was five, and my friends wouldn’t really understand.

Now I didn’t know who I was. I wasn’t PANDAS!Trinity, and I wasn’t the girl I was before PANDAS!Trinity. I was conscious enough to acknowledge I had ADHD and to listen to my mother. This did not actually benefit me, as she would tell me stories about when I was a tiny child and I would be ridiculously outgoing. I felt awkward whenever she did, because I could never imagine doing what she would tell me I did. After a while, like I separate PANDAS!Trinity and me, I began to think I wasn’t Trinity. I began to think I was ADHD!Trinity and I had stolen Professor’s child from her. Trinity had been pushed out by ADHD!Trinity and ADHD!Trinity was pushed out by PANDAS!Trinity. I was the poison that had taken their child away. I had images in my head of running away and making a fake name for myself. I collected a bunch of words from other languages meaning poison or toxin. These were all going to be possible future fake names.

For a time, this was what I thought of whenever I thought of my future, because I couldn’t bear the guilt of taking my parents’ child away. Then I broke down while talking to my mom. I told her how I had taken her real daughter away, how I had poisoned her body. I was the conscious thought of the ADHD. Even though I told her all this already, I’m sure she’s tearing up reading this. My mother hugged me and said, no matter what, I was her daughter, and that I was so much better then she ever imagined I would be.

I don’t think that my ADHD and PANDAS don’t or won’t have residual effects on me after I’m rid of them. I don’t think that my PANDAS isn’t or wasn’t part of me. It helped shape who I have grown up to be. I don’t think that my ADHD is something that needs to be ‘cured’; however, I will not deny myself a chance to make my life easier. Life is hard enough without more roadblocks, so I plan on getting rid of the ones I can. But that doesn’t mean my mother doesn’t love me now, and it doesn’t mean I won’t be me.

I will always be me. Whether I am being held back or made different by things, I will always be me.

~ Trinity

P.S. I wrote this at Autism One 2013, and have been editing it and working up the courage to send it in since then.

*About the writer: Trinity is 14 years old, goes to high school during the day, and is writing her first novel in her spare time. A big fan of fantasy and anime, she is working hard to live the best possible version of her life. She lives with her mother and younger brother in New York.

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29 Responses to ADHD, PANDAS and Myself: Finding the Best Version of Me

  1. Pingback: Anti-Vaxxers Say "You Vaccinate, So We Don't Have To!" | The Thinking Moms' Revolution

  2. You have made some good points there. I checked on the
    web to find out more about the issue and found most
    individuals will go along with your views on this website.

  3. Victoria J West says:

    Thank you Trinity! I hope we hear more from you!

  4. Filly says:

    Thank you Trinity for giving me your perspective. I happened to read this today, when a few incidents happened at school that were clearly PANDAS related. It really helped me to have a better insight into the way my son was feeling. He went from 0-60 in a flash and pushed another student and hit one of the teachers. You were able to control yourself at school, but he is younger and doesn’t have that ability, yet…and while it’s so stressful for him and I… I love him with all my heart and soul (as your mother does), and I am so thankful to you for writing this piece. It has helped ME tremendously! Keep writing, you have a gift. Filly xo

  5. Friend says:

    Trinity, I can never understand what that is like. I know that I threw fits growing up but I never had PANDAS and I could never understand. Not fully, anyway, but Trinity, I know that I have a better understanding of it than I could have otherwise. I haven’t known you for long but I’m proud that you are my friend and I know that even if you aren’t the same as you were, you could never poison who you were.

    You are one of the most amazing people I have ever met and if you were different before, that’s okay, you didn’t change like you used to. You are always kind and funny, you don’t hate for the little things. Little things don’t make you blow up and the fact that you got over something like this is extraordinary. If you did anything to who you were, you just made her better, you let her grow and stay conscious and always have control.

    This whole comment didn’t come out how I wanted but you know me, you know how I speak and you know what I mean, and I’m proud of that. I’m proud you know me.

    -Friend

  6. Cobra says:

    Trinty, I reiterate all the sentiments already stated. Gratitude for sharing your perspective. The bravery that you have shown is astounding. I will be sharing this thoughtful and deep piece with so many parents who are trying desperately to understand what is transpiring inside of their child. Go to sleep tonight, feeling deep in your soul, the knowledge that you have spread a lot healing and made many positive waves for families all around the globe with your story. Looking forward to more beautiful posts from you in the future. xoxo

  7. 3xmommo says:

    I love this article. You have written such a wonderful piece! Many of us moms don’t know exactly how it feels to have PANDAS, and you have described your feelings so well. Thank you so much for sharing. By sharing, you help others. Thank you for your bravery!

  8. Thinking Moms' Revolution says:

    Trinity – THANK YOU so much for writing this. The world needs to know what you have gone through. I know it took courage, but look at these comments – you are an amazing young woman. I wish you every little bit of success. xo
    -Goddess

  9. Sugah says:

    Trinity, Thank you for having the courage to write this and give it to your mom to post. I am so so so proud of you. You will never know the lives you will touch in an incredibly positive way with the unique outlook you have given to us. It is one thing for us parents to talk about recovering….but to hear the positive effects of having been recovered. It is just so so powerful. Again, thank you for sharing. You have done a really good thing here.

    xo

  10. Brandi says:

    Trinity,

    Thank you for sharing your feelings. It was extremely insightful and very well written. You should be very proud of yourself 🙂 All you can do every do is do your absolute very best. xoxo

  11. Wendy Sokol says:

    Undeniably well written. This talented young lady is able to write with great feeling. She’s a chip off the old block for sure. Looking forward to more from her.

  12. Susan says:

    Such a brave, beautiful and inspirational debut from Trinity. Thank you for letting us read about your journey. I’m so proud of you. ❤❤❤

  13. Wendy Nawara says:

    Brave, brave Trinity. I type this as I listen to my teen PANDA raging. I understand, and I know you will find your best YOU.

  14. Jaima says:

    Trinity,

    You have a gift and maybe you can use that to encourage other young kids going though this?
    My daughter is going through similar things and it would be great if she knew or could talk to someone else that has went through this and know it isn’t her fault.
    She is 8 and I will admit that I forget her anger is not in her control.
    We can all learn from this.

  15. Donna Powers says:

    You are an amazing young woman. Thank you for sharing this…from the deepest bottom of my heart. I raised two kids (now amazing young men) who were diagnosed with ADD/ADHD and learning disabilities in the 1980’s. My oldest son had severe anger problems at home. I hope one day that they will be able to write and tell me what it was like for them. We all tried so hard to work with the limitations but I know so often that I was so busy advocating for them at school that I have missed how this impacted them.
    Bless you! And I know of at least one other person who would like to read this. She is helping a young man who has just recently been diagnosed with PANDAS. She and I are homeopaths working to help get kids healthy again and to support finding the way back to who you really are…a creation of love.
    Keep writing and keep sharing. The world needs you.
    donna

  16. Bless you, Trinity, for having the courage to speak out and tell your story. Just doing so will help others.

  17. bill says:

    Proud of you. And so glad you have worked hard to get to the point where your can find the good and great in life and in your relationship with your mother.

  18. ann says:

    This is my daughter and as of 3 months ago my 6 year old son. What are you doing or how did you heal? I cant figure out the sudden rages both my kids get over simple things. I get the hand written notes too. Can I contact you?

    • Professor says:

      She doesn’t really know the details of what we did. We DIDN’T go to a doctor because I was terrified of the standard treatment, long-term antibiotics, because I had a pretty good idea it was all the antibiotics around her birth and early life that were largely responsible for the situation. The first thing we did was take down the inflammation and deal with the anxiety that would set her off. Started with fish oils to reduce inflammation, then GABA, Taurine, 5 HTP and SAMe to reduce anxiety and OCD-type thinking and behavior. As she said, progress was by no means smooth, though, and something else was needed. At one point, I added in natural bacteria killers, but I can’t quite remember which. The final blow, though, came through homeopathy.

  19. Lynn says:

    wow…thank you..

    I suspect there is info you/your Mom might have posted somewhere explaining how “rescue” was accomplished?
    – diet followed?

    would it be possible to provide a link/info?

    thank you.

  20. Warriormom23boys says:

    Trinity is the union of three divine persons. Clearly you are that and so much more. I first learned about the Thinking Moms at Autism One in 2012. I look forward to each blog entry like waiting for a lifeline. I briefly blogged about my own son’s fight against autism when we began biomedical interventions and he rapidly responded. Then, a sudden horrific setback took away many of his gains and almost all of my strength. The change was as devastating as his first sudden regression into autism. PANDAS.

    I have started then deleted more comments to the various Thinking Moms than I can count because so often their story is my story and I want to feel connected to these brave and knowledgeable women but I get too overwhelmed with emotion. Today I will not hit the delete button because your courage as a young person to share is what TMR is all about. Part of the generation that will not be forgotten.

    • Symone R says:

      Very well said.
      It’s an instant connection when you see others on the same path.
      Well done for this comment and all comments give reassurance to other families on the journey too.
      Warrior Mums/Parents/Caregivers we are united 🙂

  21. Erica says:

    Dear Sweet Trinity,

    Thank you for having the guts and heart to write this wonderful article. This is so helpful to me as a mom. I have three children – two girls with ADD, one son recovered from autism. My oldest and youngest also had PANDAS and a host of other things. I’ve spent the majority of their young lives trying to help them feel better and live happy, healthy lives.

    As a mom, I didn’t spend a lot of time thinking about how things looked from their end. I only knew every moment of every day from my perspective. I always wondered what I had done to make my oldest daughter so angry. I felt I had failed her in some way. Reading your article has helped me so much to gain insight into how she may have felt. And I realized we all blame ourselves when really, there is no one to blame.

    So thank you. My life motto is “Be brave. Love life.” because it takes guts to really love life with all it has to offer and face it head on. And I thank you today for being brave. It has helped me so much.

  22. Gilded Thinker says:

    What a beautiful, heartbreaking blog. Thank you for sharing your feelings, your perspective. You are an amazing young woman, Trinity.

  23. Blaze says:

    WOW, Trinity. THANK YOU SO MUCH FOR THIS INSIGHT! You are amazing in so many ways. You are teaching us so much. Big love to you today and everyday for your courage, strength, bravery and general coolness. You rock.

  24. Melissa says:

    Thank you for your courageous blog!! Your description of controlling fits of anger at school and taking it out on your mother perfectly describes my son, who has PANS. Thank you for bringing awareness to this!

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