Parents Raise Awareness for Autoimmune Disorder That Affects the Brain

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DES MOINES, Iowa –October 9th is PANDAS/PANS Awareness Day. Parents of kids with the autoimmune disorders that affect the brain will be at the Iowa capitol to mark the day.

Katie Lund has a large binder full of her son Will’s medical records. She takes it to every doctor’s appointment as she helps her son feel like himself again. Lund said, “He got sick, and he just kind of became a different kid. He had a lot of anxiety.”

After a couple years and many trips to counselors and psychiatrists, the now eleven-year-old was diagnosed with PANDAS, which stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection.

Lund said, “He would get a lot of strep infections. He wouldn`t say anything. He developed a neck tic.”

Jenna Nelson’s daughter has PANS, or pediatric autoimmune neuropsychiatric syndrome, which in her case was caused by a virus. Nelson said, “She started having a lot of anger, and rages. A lot of anger. We started seeing psychiatrists.”

Nelson’s daughter saw eight psychiatrists and three neurologists before finally getting the diagnosis. “We know her body just can’t fight off the viruses, and we’re really looking for anybody to help us anyway we can. And that’s the biggest challenge. A lot of doctors aren’t educated enough in it or don’t support the diagnosis.”

Dr. Jon Ahrendsen, a family physician with Iowa Specialty Hospital in Clarion, said, “They`re disorders that are usually are not well recognized, controversial, not every physician believe they`re an actual entity.”

He’s part of the PANDAS Network and treats children with the disorders. “They`re usually characterized by a very acute onset of dramatic symptoms the child has. They may have obsessive-compulsive disorders, tics, profound personality change, depression, anxiety,” he said.

Treatment can include antibiotics, anti-inflammatory medicine, and in extreme cases something called IVIG, which can cost $10,000 an infusion.

Lund’s son got the infusions, which helped for a bit. She said, “We went and had it done and he was a completely different kid. He has really bad eye ticks. Mid infusion, his eye ticks went away. And we just, we had our child back. And that lasted for about 2 months, and then he got sick again and was flaring.”

Now, he’s taking monthly infusions at home. After appealing for about a year, his mom said his insurance approved it for a year.

Now, she’s working with other moms of children with PANS and PANDAS to raise awareness with medical providers and increase insurance coverage. “I really hope this helps and brings awareness. Maybe there is a parent going through a similar thing and isn’t getting an answer,” said Lund.

Governor Kim Reynolds is set to sign a proclamation declaring October 9th PANDAS/PANS Awareness Day.


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