PANS and PANDAS: Autoimmune disease awareness could save children's lives
We want you to know about an autoimmune disorder that can suddenly change a child's behavior in a scary way. Some studies show that 1 in 200 kids has it, yet few people know about it. A local doctor is sounding the alarm, so that parents understand PANS and PANDAS.
Six-year-old Noa has come a long way since being diagnosed with the rare autoimmune disorder PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome. At the time, she was a happy and healthy two-year-old, but she got sick and spiked a fever, then started acting clumsy and falling, then later terrified her parents during the night. "It was a very blood curdling kind of scream. We knew it wasn't a normal like 'I'm scared scream', and we went to get her out of her bed, and she had lost kind of control of her limbs. She couldn't walk," explains Noa's mother, Lindsey Craig.
"Everything that we knew she was, was gone. There was this crazy fear and anxiety. When I say fear, I can't describe the depth of that, like noises, sensory processing-type things, a piece of ice hitting a glass would make her have a full-blown panic attack that would take hours to recover from, and that all literally happened overnight, so it was kind of wild," states Lindsey. She says she feels fortunate that Noa's pediatrician, Dr. Paula Kruppstadt with Hope for Healing in The Woodlands and Houston, is actually an expert in this.
"She knew immediately what was happening and now that we are four years out of this, I say that we were so blessed that she recognized it immediately. From what I've heard from other parents who have gone through this, it's taken them a year or two years, to even to even get a diagnosis, because it's just not mainstream, it's not talked about," Lindsey said.
It can be challenging to get that diagnosis because there's not just one test to confirm what it is. It typically takes going through a checklist of symptoms, often beginning with obsessive-compulsive behavior, major fears, or severe restricted eating with symptoms in at least two other categories. "There can be physical findings, such as children feeling like something's on their skin, or they'll have tics, motor or vocalizations of abnormal movements, wiggly. There is also hyperactivity. Sound hurts their ears, bright light hurts their eyes," explains Dr. Kruppstadt. The list goes on, from messy handwriting, dilated pupils, to bladder issues with frequent urination.
Strep throat is what sparks PANDAS, so it stands for Pediatric Acute-onset Neuropsychiatric Disorder Associated with Streptococcal Infections. PANS is different, in that it can turn up after a number of illnesses. "You have to look for infections like Lyme disease, Bartonella, Barbesia. You look at influenza, COVID, Epstein Barr Virus, Hand, Foot and Mouth, Fifths Disease, which is slapped cheek, cytomegalovirus, and Herpes virus family," states Dr. Kruppstadt.
Noa was also exposed to toxic mold before her PANS diagnosis and diagnosed with CIRS (Chronic Inflammatory Response Syndrome), so doctors suspect people who can't handle the load of toxins in the environment may be more vulnerable to PANS. Treatment can be tricky. Dr. Kruppstadt says infection often lives in the tonsils, which is part of the treatment plan, to rid the body of infection. "So, tonsillectomy, adenoidectomy, homeopathy, functional medicine principles. The most powerful thing people have is in their kitchen. When they remove animal dairy from their diet, casein binds to folate receptors in the brain, and it impairs neurologic function so take dairy out. Take gluten out, which is inflammatory. Work on sleep and get these kids moving, you don't allow them to be isolated. If they're severely anxious, you need to be careful, and if you need psychiatric care for a time, that can be added too," says Dr. Kruppstadt.
Noa is now thriving, because of her quick treatments. Getting the right diagnosis is imperative to make sure kids are safe. "It's very important, because this is ongoing brain destruction and if you don't address it, it could lead to death," says Dr. Kruppstadt.
On that note, another family feared they would lose their son to PANS, after he was misdiagnosed. Eighteen-year-old Ryan Wilkerson's parents say he ended up in a psychiatric ward because of a misdiagnosis. "There needs to be a much broader awareness across the board about this illness. Pediatricians need to learn how to recognize the signs, as well as hospital staff," encourages Ryan's mother, Lisa.
"What would happen is that we would get dismissed as straight psychiatric because his symptoms were almost all neuropsychiatric. You feel so desperately alone, and there's no rulebook for this," explains his dad, Craig. They felt fortunate to meet up with Dr. Kruppstadt, who knew immediately what Ryan was experiencing.
"We think that about one in 200 children have this and they are labeled with just a plethora of different titles, from attention deficit disorder, oppositional defiant disorder, separation anxiety, to an anxiety disorder," says Dr. Kruppstadt.
It can be tough on the entire family. "You can't even function in your house. You don't know if you're going to get two hours of sleep at night. There's no sleep, screaming, throwing food, and extreme personality changes. You've lost your child, and the grief that goes with that, because all your dreams, all your endearing plans for your child's future and your family's future, because we're all linked together. They're just going down the tubes right in front of your eyes, and you don't know how to get off this roller coaster," says Craig.
"These children's immune system is not working correctly. So, they may not run a fever. So parents, when they see a lot of hyperactivity or abnormal movements, if their children's pupils are dilated, or if it's like that is not their child in front of them, they're full of rage and they rage on and on, unlike a normal temper tantrum, you need to find a practitioner who will ask the right questions and believe you and not blame it on your parenting," states Dr. Kruppstadt.
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The Wilkerson's say they went through a devastating time of being forced to commit their son to a mental institution, when he needed to be getting medical treatment, not mental. They suspect he was also exposed to toxic mold in their home in Houston before all this happened, so they moved to a different house and now live in Austin.
Ryan now undergoes infusions of IVIG, purified antibodies from plasma to boost his immune system, and will be doing that indefinitely. He's getting stronger every day, but his parents believe an earlier diagnosis would have changed everything. "It's a tragic event for the entire family. The siblings suffer greatly as well, because all the attention goes to the most sick child. It takes its toll on everybody," says Lisa.
Not everyone's symptoms are this severe. It can be more subtle, and it can also wax and wane, being worse on some days than others. Most children are diagnosed with PANS or PANDAS between the ages of three to 13 but it can happen at any age and even lead into adulthood, if not treated properly.
