PANS and PANDAS: Autoimmune disease awareness could save children’s lives

HOUSTON – We want you to know about an autoimmune disorder that can suddenly change a child’s behavior in frightening ways. Some studies show that 1 in 200 children have this condition, but few people know about it. A local doctor is sounding the alarm so parents can 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. He was a happy and healthy two-year-old at the time but he became ill and developed a fever, then began acting clumsy and falling over, later frightening his family throughout the night. “It was a very bloodcurdling scream. We knew it wasn’t a normal scream like the ‘I’m scared scream,’ so we went to get her out of her bed and she had kind of lost control of her limbs. She couldn’t walk,” explains Noa’s mother, Lindsey Craig.

“Everything we knew she was was gone. There was insane fear and anxiety. When I say fear, I can’t describe the depth of it; voices, sensory processing type things, like a piece of ice hitting glass. Lindsey would cause her to have a full-on panic attack that would take hours to recover from.” and it all happened literally overnight, so it was kind of crazy,” says Lindsey. Noa’s pediatrician, Dr. He says he feels lucky that Paula Kruppstadt is an expert on this topic with Hope for Healing in The Woodlands and Houston.

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“She knew right away what was going on, and now that we’ve been out of this for four years, we’re so lucky she caught it right away. From what I’ve heard from other parents who’ve been through this, it hit them hard. Lindsey said: “We might even wait a year or two until we get a diagnosis. because it’s not mainstream, it’s not talked about,” he said.

This diagnosis can be difficult to make because there is no single test to confirm what it is. A checklist of symptoms needs to be reviewed, usually starting with obsessive-compulsive behavior, major fears, or severe restricted eating accompanied by symptoms in at least two categories. “Children may have physical symptoms such as feeling like there is something on their skin, or tics, motor movements or vocalizations of abnormal movements, and fidgeting. There is also hyperactivity. Sound hurts their ears, and bright light hurts their eyes.” Dr. explains Kruppstadt. The list goes on, from messy handwriting, dilated pupils, to bladder problems with frequent urination.

Streptococcal throat is what fuels PANDAS, so it stands for Pediatric Acute-Onset Neuropsychiatric Disorder Associated with Streptococcal Infections. PANS is different because it can occur after many diseases. “You have to look at infections like Lyme disease, Bartonella, Barbesia. You’re looking at Influenza, COVID, Epstein Barr Virus, Hand, Foot and Mouth, Slap on the Cheek Fifth Disease, cytomegalovirus and the Herpes virus family,” says Dr. Kruppstadt.

Noa was also exposed to toxic mold disease and diagnosed with CIRS (Chronic Inflammatory Response Syndrome) before being diagnosed with PANS; Therefore, doctors suspect that people who cannot handle the toxin load in the environment may be more vulnerable to PANS. Treatment can be difficult. Dr. The infection usually lives in the tonsils, which is part of the treatment plan to get rid of the infection, Kruppstadt says. “So tonsillectomy, adenoid surgery, homeopathy, principles of functional medicine. The most powerful thing people have is their kitchen. When they eliminate animal milk from their diet, casein binds to folate receptors in the brain and impairs neurological function, so consume dairy products. Eliminate gluten, which is inflammatory. Work on sleep.” and move these kids around, don’t let them become isolated, you need to be careful if they’re seriously anxious, and if you need psychiatric care for a period of time, that can also be added,” says Dr. Kruppstadt.

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Noa is now getting better thanks to his rapid treatments. Getting the correct diagnosis is essential to make sure children are safe. Dr. “This is very important because this is ongoing brain damage, and if you don’t address it, it can result in death,” says Kruppstadt.

Meanwhile, another family feared losing their son to PANS after he was misdiagnosed. The parents of eighteen-year-old Ryan Wilkerson say he was admitted to a psychiatric ward due to a misdiagnosis. “There needs to be much broader awareness of this disease in general. Pediatricians, as well as hospital staff, need to learn how to recognize the signs,” encourages Ryan’s mother, Lisa.

Her father, Craig, explains: “We would be dismissed outright as psychiatric because almost all of your symptoms are neuropsychiatric. You feel so alone and there’s no rule book for that.” Dr. knew immediately what Ryan was going through. They felt lucky to have met Kruppstadt.

Dr. “We think about one in 200 children have this disorder, and it has been labeled under many different titles, from attention deficit disorder to oppositional defiant disorder to separation anxiety to anxiety disorder,” says Kruppstadt.

It can be difficult for the whole family. “You can’t even do your work at home. You don’t know if you can sleep two hours at night. There is no sleep, you scream, you throw food, there are extreme personality changes. You lost your child.” and the grief that comes with it, because all your dreams, all your loving plans for the future of your child and your family, because we are all interconnected, are fading away before your eyes. and you don’t know how to get out of this roller coaster,” says Craig.

“These children’s immune system is not working properly. So they may not have a fever. So parents, when they see a lot of hyperactivity or abnormal movement, if their child’s pupils are dilated, or if it’s not their child. They’re full of anger in front of them and they’re constantly getting angry, unlike a normal tantrum, they’re going to ask the right questions, You need to find a practitioner who will believe you and not blame your parenting,” says Dr. Kruppstadt.

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The Wilkerson family says they went through a devastating time when they had to commit their son to a mental hospital, even though he needed medical treatment, not mental treatment. They suspect she was also exposed to toxic mold growth in their Houston home before all this happened, so they moved to a different home and now live in Austin.

Ryan is now receiving an infusion of IVIG, antibodies purified from plasma, to boost his immune system and will do so indefinitely. He is getting stronger day by day, but his parents believe that early diagnosis will change everything. “This is a tragic event for the whole family. Siblings also suffer greatly because all the attention goes to the sickest child. This has a negative impact on everyone,” says Lisa.

Not everyone’s symptoms are this severe. It may be milder and may wax and wane, with some days being worse than others. Most children are diagnosed with PANS or PANDAS between the ages of 3 and 13, but the condition can occur at any age and can even progress into adulthood if not treated appropriately.

For more information, see Dr. Kruppstadt encourages everyone to check out what he calls it. powerful source.

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