To the Little Girl Just Diagnosed With PANDAS and CVID

Dear 9-year-old me,

I know you’re scared. “PANDAS” sounds pretty funny, but how you’ve been feeling is pretty scary. I know you have a lot of questions. I’ll try to answer a few of them.

What does PANDAS mean?

I promise you aren’t turning into a bear. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, a subclass of PANS (Pediatric Acute-onset Neuropsychiatric syndrome). When you get sick, your body gets really confused and thinks your brain is what’s making you sick so it attacks it. Which is why your brain has felt so weird lately. It’s had a battle declared against it!

Will I always feel like this?

Because PANDAS is triggered by strep throat infections, you’ll feel a lot better when you aren’t sick. I don’t know for sure if your brain will ever be completely back to how it was. I wish I knew, but I’m still in this battle too, seven years later. Now, little girl, you’re almost 17. But I promise it won’t always feel this scary. You’ll get used to it. You’ll figure out ways to fight it. There’s quite a strong fighter inside of you, little girl. You’ll figure this out. Your symptoms will go up and down, some days will be harder than others; sometimes you’ll have a lot of OCD but sleep fine at night, sometimes your OCD will be manageable but you’ll have tics non-stop. I’m not going to lie to you. This isn’t easy. But I know you can do it.

What will my friends think?

These next few years will teach you a lot about true friendship. The people you call friends right now might not stick around, but that’s OK. Better friendships will grow over time. You won’t be alone. (For more on what you’ll learn about friendship, go here.)

Does anyone understand?

Yes. PANDAS is estimated to affect 1 in 200 kids, and you will end up meeting more kids with PANDAS. A lot of them actually. Some you’ll only talk to online, some you’ll meet in person. You’ll even meet some other pretty cool sick chicks (shoutout to the original sick chick) without PANDAS. You’ll even be able to help some of them out when they’re feeling like you are — overwhelmed, scared, confused, hopeless, lost — but don’t worry about them right now. You’re overwhelmed enough as it is.

My doctor said I also have CVID. What does that mean and what does that have to do with PANDAS?

CVID is Common Variable Immune Deficiency. It means you get sick a lot, as you already know, and it can take a while before you feel better. So it might be a bumpy road with a lot of PANDAS flares that seem to last a really long time. You might have to get different treatments than other kids who have PANDAS because of your CVID, or you might have to get the same thing more often.

Will I ever be a normal girl again?

Oh, Pinocchio, normal is so overrated. You probably won’t ever classify yourself as a “normal” girl again, but give it some time and you might not want to anymore. After all, why be normal when you can be so much better than normal? You can be fabulous.

For now, try not to worry too much. Figure out how to work with this new brain you have. Figure out how to cope with depression and mood swings and how to challenge OCD. I know it feels really big, bad and scary now, but I promise a lot of good things are going to happen that couldn’t have happened without this. You’ll be OK. I believe in you.

With love,
16 year-old you

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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