Dear Mama/Friend/Family Member/Complete Stranger,I see you staring at me as my 7-year-old is arguing with me that he has to have those cookies or he’ll die. I can almost hear your thoughts churning in your head, of how spoiled he is or that all he needs is some good discipline. When you saw us walking in to the store, when it was 35 degrees out, me in my warm socks and boots, and him in shorts, 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 clothes. 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 store or repeating inappropriate words over and over. But now, since being blessed with my son and his 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 18 months ago, my sweet, spunky, a bit hyper 6-year-old became a different person. At first I thought it was me or his grief. 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. If you are close to our family you know that we have had countless appointments, changes in medication and different types of therapy. I just stopped sharing after many failures. 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 him more than I do, and his 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 his age, or just needs a few good spankings… but you should know his issues aren’t just psychological. His behavior and physical symptoms are due to an autoimmune disease that started from strep throat and is causing his own antibodies to attack his brain cells. Punishing him when he’s raging is like punishing a cancer patient for being in pain. His behavior is a direct symptom of 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. ( I am still learning this myself.)
When he repeats the word “ice-cream” or "poop" over and over for an hour straight or blurts our a curse word in anger, it’s because those antibodies are in overdrive, which can happen from something even minor like having a cold or being around someone who carries strep.
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 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 anger fits. Just know your encouraging words are what helps me keep going.
If our children are in school, or church, or activities together, please, oh please, keep your child home when they’re sick because my child suffers dearly when he gets sick or is around 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 smells funny 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 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 his family and familiar environment, it’s usually when he feels comfortable enough to release his finger from the proverbial dam of anxiety, tics and obsessive compulsive behavior he’s been struggling to keep inside every second he was with you.
I know when you tell me there’s nothing wrong with my child, that he’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 him during one of his rages, it probably isn’t because he’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 his disease flaring, which could mean he has another infection or something has changed in his schedule, which causes his sweet little OCD mind to completely melt down.
My main objective in writing this isn’t to cause anyone guilt or shame but rather to inform because I know my son will be OK . 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.
Sincerely,
A PANDAS parent
Adapted from Kathleen Butler
You see, about 18 months ago, my sweet, spunky, a bit hyper 6-year-old became a different person. At first I thought it was me or his grief. 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. If you are close to our family you know that we have had countless appointments, changes in medication and different types of therapy. I just stopped sharing after many failures. 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 him more than I do, and his 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 his age, or just needs a few good spankings… but you should know his issues aren’t just psychological. His behavior and physical symptoms are due to an autoimmune disease that started from strep throat and is causing his own antibodies to attack his brain cells. Punishing him when he’s raging is like punishing a cancer patient for being in pain. His behavior is a direct symptom of 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. ( I am still learning this myself.)
When he repeats the word “ice-cream” or "poop" over and over for an hour straight or blurts our a curse word in anger, it’s because those antibodies are in overdrive, which can happen from something even minor like having a cold or being around someone who carries strep.
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 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 anger fits. Just know your encouraging words are what helps me keep going.
If our children are in school, or church, or activities together, please, oh please, keep your child home when they’re sick because my child suffers dearly when he gets sick or is around 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 smells funny 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 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 his family and familiar environment, it’s usually when he feels comfortable enough to release his finger from the proverbial dam of anxiety, tics and obsessive compulsive behavior he’s been struggling to keep inside every second he was with you.
I know when you tell me there’s nothing wrong with my child, that he’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 him during one of his rages, it probably isn’t because he’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 his disease flaring, which could mean he has another infection or something has changed in his schedule, which causes his sweet little OCD mind to completely melt down.
My main objective in writing this isn’t to cause anyone guilt or shame but rather to inform because I know my son will be OK . 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.
Sincerely,
A PANDAS parent
Adapted from Kathleen Butler
I’m so proud of you for staying the fight in finding out what really was going on with your kiddo! Too often parents are thrown diagnosis’ of ADHD, Anxiety and the list goes on and they just accept that that’s the issue at hand!!
ReplyDeleteMany prayers for your family and your kiddo as you learn more on PANDA and keeping your precious boy well!
Dawndra
Oh sweet sister! I’m so proud of you! God is so good! You are going to help so many people through your own journey! Though I hate that Jackson and you all are having to go through this trial and tribulation, I know God will guide, direct and protect you all! I love you a ton! Praying and hoping for strength, comfort and peace as you battle daily!
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