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To Anyone Who Knows, Loves, Teaches and/or Meets a Child With PANDAS

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Dear Mama/Friend/Family Member/Complete Stranger,

I see you staring at me as my 4-year-old is lying on the floor screaming at the top of her lungs that she has to have those cookies or she’ll die. I can almost hear your thoughts churning in your head, of how spoiled she is or that all she needs is some good discipline. When you saw us walking down the road to the restaurant, when it was 35 degrees out, me in my warm socks and boots, and her in her Crocs with no socks, I know you were tempted to say something. In fact, you may have even let a comment or two slip out about it’s too cold to be wearing summer shoes. I get it. I really do, and in the past I too would have those same thoughts if I saw a child screaming in a restaurant or repeating inappropriate words over and over. But now, since being blessed with my daughter and her unique set of challenges, I find myself saying a silent prayer for the frazzled parent I see standing next to their child, who’s hurling canned goods across the aisle. Because now I know: they’re just trying to hold it together enough to make it to the car. Now a days, I wonder what that child is going through or dealing with, and… could they too, have PANDAS?

You see, about six months ago, my sweet, spunky, well behaved 4-year-old started misbehaving. At first I thought it was me. You can’t imagine all the doubts and fears that have gone through my mind over the past few months. If we know each other, I may have even shared some of those doubts with you, but sometimes the responses and well meaning advice were just too much for me, so I found myself retreating back into hermit mode. I know you really do mean well. Whether you’re a close friend, a complete stranger or even a family member, I know you only desire the best for my child. But the thing of it is there’s no one on this planet who loves her more than I do, and her well being is my number one priority, even over my own health and happiness.

While you may have great advice that works wonders for other kids, it may not work with mine. You may think my child just has behavior issues, or is only being a “normal” kid for her age, or just needs a few good spankings… but you should know her issues aren’t just psychological. Her behavior and physical symptoms are due to an autoimmune disease that started from strep throat and is causing her own antibodies to attack her brain cells. Punishing her when she’s raging is like punishing a cancer patient for being in pain. Her behavior is a direct symptom of her disease; it’s not due to puberty, anger, defiance, poor choices, or any of the other numerous things PANDAS kids get misdiagnosed as having or being.

Author's daughter with PANDAS smiling and looking at camera.When she repeats the word “poopy” over and over for an hour straight, it’s because  those antibodies are in overdrive, which can happen from something even minor like having a cold.

As parents, we all have our own struggles and trials, so while I know you too may be dealing with your own battles, right now, this is our journey and some days, it’s all I can to to keep us above water. I truly hate being self-centered, but some days I have to be just to survive.

Every day is different for us, and things can go from great to horrible in a minute flat. Please understand that while I need and crave your friendship, I may have to cancel plans… a lot. If we’re friends, please don’t give up on me. Please continue to reach out to me. I know you get frustrated when I never call or answer my phone, but it can be exhausting trying to carry on a conversation while trying to prevent a meltdown. While I want nothing more than to have a conversation that doesn’t include gibberish or statements more bizarre than anything you’ve probably ever heard – including from those who wouldn’t pass a sobriety test even if they cheated — sometimes it’s all I can manage with a quick text between my child’s crying fits. Just know your encouraging words are what helps me keep going.

If our children are in school, or church, or child care together, please, oh please, keep your child home when they’re sick because my child suffers dearly when she gets sick. Even better, let me know if your child gets sick, so I can be prepared for what may come.

If our children are friends, please help me nurture their friendship. I know my child may act different at your kid’s birthday party. I know how annoying it is when my child refuses to eat your food because it’s the wrong temperature or has sauce on it. You may be afraid my child’s “bad” behavior may rub off on yours, but instead, try using their friendship as a wonderful teaching opportunity. Explain to your child that their friend has a disease that sometimes makes them say or do strange and even scary things completely out of their control. Explain to them that they can’t catch it, and be sure point out all of the great things about their friend. Know that because of their friendship, your child will learn to have compassion for others and acceptance for those different than themselves.

I know you’re only trying to help when you approach me about buying your special oil/drink/vitamin/mix, and while I’m happy to hear about all the success stories, and cures it’s yielded, just keep in mind, I’ve already done more research than most doctors have on PANDAS and have probably already read pages and pages of studies about your oil/drink/mix/vitamin. Each child with PANDAS is unique, so what works well for one may not work at all for another. Understand that I’ve spent countless hours consulting specialists, making phone calls, taking my child to doctor appointments and getting feedback from other PANDAS parents, and while you may disagree with the treatment plan our child is on, you can bet it’s the very best one for my child at this time.

I know you’re just trying to be positive by saying my child is perfect for you in school/church/your house, but as glad as I am to hear that, it can also make me feel like a complete failure when my child gets home and dissolves in a screaming fit from overstimulation and exhaustion. Don’t let that stop you, though, from telling me about my angelic kiddo! Just remember you’re only seeing a brief snapshot of our lives, and the amount of energy it takes for my child to hold it together during school/sports/etc. is like us running a marathon after having run one the day before. When my child comes home to the safety of her family and familiar environment, it’s usually when she feels comfortable  enough to release her finger from the proverbial dam of anxiety, tics and obsessive compulsive behavior she’s been struggling to keep inside every second she was with you.

I know when you tell me there’s nothing wrong with my child, that she’s just a little hyperactive, you’re only trying to ease my fears, but again, unless you live with me, you’re only seeing a small snippet of our daily lives. I know you can’t understand what we’re dealing with, and honestly I’m OK with that. But just keep in mind,  if you do happen to see her during one of her rages, it probably isn’t because she’s had too much sugar, or not enough protein, or has a suppressed bad childhood memory, been abused, or even has an anger issue. It’s most likely her disease flaring, which could mean she has another infection or something has changed in her schedule, which causes her sweet little OCD mind to completely melt down.

If you’re a stranger, I would rather hear your questions than see your stares. If you’re a friend, I would rather have a listening ear than words of advice, and if you’re family, I would take encouragement over judgment any day.

Know that my main objective in writing this isn’t to cause anyone guilt or shame at all because I know my daughter will be OK no matter how others treat her. However, I would hate for anyone to miss out on the blessings, wisdom and sheer appreciation for the little things in life sure to come from knowing a PANDAS kid, and their family.


A PANDAS parent

For more info on PANS/PANDAS, check out these sites:

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

Follow this journey on The Wondering Widow.

Originally published: November 17, 2015
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