First, let us have the honor to say that children with PANS, PANDAS, or AE have more fight, courage, and perseverance than anyone else you know. Even in their darkest time, they prove that they aren’t willing to give up. Through their fight, a family’s strength will flourish. Through their courage, children will understand they are not alone. Through their perseverance, they will bring children hope for healing.
We are the parents of two children diagnosed with PANS/PANDAS/AE. What does PANS/PANDAS/AE stand for?
PANS stands for Pedatric Acute Neuropsychiatric Syndrome
PANDAS is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections
AE stands for Autoimmune Encephalitis.
PANS and PANDAS are described as a sudden onset, and in my opinion it doesn’t matter if the onset is mild or severe, of debilitating neuropsychiatric symptoms. Children can exhibit signs of obsessive compulsive disorder (OCD), vocal and/or motor tics, emotional lability, age regression, autistic-like symptoms, cognitive decline especially in the areas of math, reading, and writing, anxiety, oppositional defiance disorder (ODD), food restriction (or the opposite, compulsion to binge eat), and rage (or rage attacks). To the extreme are phobias, hallucinations, catatonia, and/or dissociative events. You may see AE referred to along with PANS/PANDAS since the etiology is thought to be an autoimmune attack on the brain causing inflammation. There are many forms of AE.
Our children had a sudden onset at ages 11 and 8 of the extreme symptoms of PANS/PANDAS/AE, including hallucinations, fears, and autistic-like symptoms. Along our journey for answers, we have come across invaluable information that we’d like you to have available at your finger tips. This site is great to share with friends, family, neighbors, and educators. We originally created this website to keep track of information without losing it. However, we found that many parents also found the site helpful. So it’s our way of keeping track of information while sharing it with others. We want to save you time because we know how much time AND energy goes into caring for your children. Now you don’t have to search for something we’ve already found. There is a lot of information out there and this collection is meant to help get you started.
We can’t express this sincerely enough. We hope that you never need any of this information. But if you do, we hope it helps you find answers, peace, and healing.
We want to thank our friends who stuck by us. We also want to thank our current psychologists, rheumatologist, immunologist, nurse practitioner, and our IEP advocate who have gotten us this far and who have helped us navigate this disorder and answered our pleas for help, and are relieving us of our tears of devastation, and our years of torment.
My husband and I were talking about how this disease has changed our lives and made us warriors. A few days ago I said to him, “Before, when our kids were sick…..” Then I realized what I had just said. I said , “…when our kids WERE sick…” Past tense! We hope all of you will have this moment very soon.
The crazy thing about this disease is that you can never stop and relax. At times that seems to be the hardest part, letting your guard down for a bit. And like countless other PANDAS/PANS/AE parents we wait, walking on eggshells, dreading the next flare while desperately trying to give our children something resembling a normal life. Going to bed, going outside, or going to camp in the summer, things that are, for most people, mildly challenging seem like Herculean effort for PANS/PANDAS/AE families.
The irony is that we consider ourselves lucky in all this. Miraculously, after three years of anguish and seven years of misdiagnosis, we have somehow clawed our way out of the dark and treacherous PANDAS/PANS/AE hole. Both our children are either in remission or 98-99% almost every day. We never say 100% because who, in this world, is ever 100%.
The doctors are few and far between who understand the disorder and how to navigate its many appendages. We have learned most on our own. Treatments include non steroidal anti-inflammatories like ibuprofen, steroids like prednisone, antibiotics, and if necessary, high dose immunoglobulin therapy or other immune modulating therapies. Insurance companies don’t want to pay for treatment and happily deny requests. We have spent thousands of dollars for denied treatments. Treatments that are readily available and used for other autoimmune disorders.
So, we trudge on because we don’t really have a choice – there’s no way that we’re going to give up on our kids or the doctors out there who want to help but don’t know how. We’ll educate the doctors and our communities, our friends, and our families. But most importantly, we will support all the families out there who have kids with PANS/PANDAS/AE and bring them hope in their darkest time.
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