Our family’s story needs to be told.
At 15 months of age, our son Isaac was diagnosed with a rare genetic variation. He was never an easy child, so it registered as “more of the same,” albeit deeply troubling, when at age four, he progressed from difficult to nearly impossible. Week by week, month by month—after a frightening hospitalization from the flu and pneumonia—Isaac’s behavior deteriorated into inconsolable, screaming fits that would last for hours at a time. His cherubic face would morph into rage, his arms and legs into weapons, a risk to anyone in his path. At home, we were at a loss for how to help him. His school, though accustomed to the behavior problems that often accompany children with language-based learning differences, had never seen a child with his level of intensity.
Isaac’s fiery rages became our new normal. Some seasons were better than others, but for seven long years (and beyond), they all but controlled our life. We assumed, as did Isaac’s doctors, that his genetic difference was the root cause of everything we were seeing. Still, as parents, we had lingering questions about how to account for the acute loss in academic progress and extreme anxiety that seemed to accompany his sudden, recurrent, full-scale behavioral regression. It felt like we were living with two different kids, two different potentials, in one body.
Finally, when Isaac was eleven years old, he received an additional clinical diagnosis that explained the chaos: PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, a complex illness caused by a virus. And while Isaac’s genetic difference is rare, PANS is far more common than you might expect. It’s estimated that 1 in 200 children/youth has PANS, which means there are kids in nearly every school and place of worship who are living with it, whose families, more than likely, do not know.
PANS is not rare; it is rarely diagnosed, because it is not well known or understood, even by doctors. But PANS is devastating to the children and families who are impacted by it—siblings included—effectively robbing them of a happy, healthy childhood. We owe it to these kids to make PANS a household name, one that parents, teachers, and doctors in every community can recognize, leading to earlier intervention, proper diagnosis, and ultimately better outcomes.
A call to action …
Isaac’s story is unique, because Isaac is unique. But now that you know the short of it, I hope you can see why it’s so important. PANS is a complex immune-system disorder that is often overlooked as “behavior problems,” however severe, but is actually caused by inflammation of the brain, triggered by a virus or other infection. Kids with PANS are not bad kids—they are sick. And their parents are not bad parents—they are desperate for answers and help.
PANS is an equal opportunity offender, afflicting kids who are otherwise typical as well as those with underlying medical challenges, which can make it even more difficult to diagnose. It is not uncommon for PANS kids and their families to suffer for five years or longer before proper diagnosis and treatment. Please help us to change this landscape by taking the following actions:
- Share this post with your circle of influence.
- Add your email address to join our community.
- Like and follow Gray Colored Glasses on social media.
And finally, if you suspect your child or someone you know has PANS, or if you want to learn more, visit our resources page.
Gray Colored Glasses 
14 responses to “The Short Story”
Clearly & vividly expressed, dear Ann. It needs to be known & shared. I will spread the word & do all I can to share.
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Thank you so much for your support!
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Thank you for sharing this so beautifully, Ann. I pray it will be helpful to others. You and Todd have done an amazing job as parents.
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I appreciate these words so much. Thank you, George.
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Hi Ann, Thank you for writing this. How is Isaac doing? He seemed so mature and calm at the track meet. We have been working with Dr Kruppstadt’s office since April. I’ve seen improvement in Rayah and am very hopeful it continues over this next year. They’ve told us it will take at least a year to find a baseline. Anyway, thank you again. Best wishes to you and your family. Rebekah
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So good to run into you last Spring. It’s great to hear that you’re seeing improvements with Rayah. Isaac is doing well and had a good start at school. We are hoping to see a lot of growth this year.
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So thrilled that others will feel connected and heard because of you and your choice to be vulnerable and transparent. We love you and each member of your wonderful family!
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You have walked this road with us, and I can’t thank you enough, my dear friend.
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We love and support you! You will help so many others feel connected because you are choosing to share, and be vulnerable. Love and blessings to each person that finds their way to Gray Colored Glasses! XO
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Ann,
Thank you for writing about PANS. After watching you and Todd at the party on Saturday I have great admiration for you both! I watched Todd constantly teach Issac how to interact with others. I know it is very challenging! You are amazing parents! Issac and Gillian are so blessed to have parents who are so loving and kind to them.
May the Lord give you the grace, strength, and perseverance to meet the challenges of each day,
Anne Belinko
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Thank you for your lovely note, Anne. Being Isaac’s parents has taught us more than we ever would have imagined. It can be overwhelming at times, but we are thankful for our full life and our two unique and amazing kids. And our great neighbors, of course!
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Love you my dear cousin!!!!
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thank you for sharing your story. Childbirth is one of life’s more challenging moments especially when we sense that our new member of the family may not be the infant we expected and knew for 9 months prior. I too worried when I delivered a full-term little boy who was seriously underweight. I fretted but kept being reassured that all was fine. He lived for three weeks and then passed away with a major heart defect. A year later my daughter was born with another medical issue that kept us in the hospital for a week when 24 hours was the norm. However, out of these emotions I eventually ended up with a career of reaching out to families in a rural area who had so much less than i did. Maternal-child health is a topic in public health but we don’t always understand its ramifications nor do we respect the information/insight of mothers and dads. You have added so much to that work. I am planning to share it with our school community just to give them another persective for those children who struggle to make school work for them.
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What a beautiful way to channel your story into helping others. Thank you for sharing and for the important work you are doing. I’m honored for you to share my words with your community. I appreciate your comment so much.
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