PANDAS Families

Another Kind of Panda

2.13.17

It may sound cute, but it’s not. PANDAS. For most, the word inspires images of endless Facebook videos featuring cuddly, fun-loving, black-and-white bears. For Penny and Robert, parents of Alexis, their definition is much longer…and much scarier.

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.

P. A. N. D. A. S.

As Penny describes it, “PANDAS happens suddenly. We remember the exact moment everything changed. At 9:29pm on Friday, January 31, 2014, Alexis was a normal, six year-old girl. At 9:30pm, she wasn’t.”

Alexis started telling her parents everything she was doing. Everything. “I’m touching my cup. I’m moving it to the table. Now I’m standing up.” Something was wrong.

What Penny could only describe as a sudden onset of obsessive-compulsive disorder soon turned into aggressive hallucinations and never-before-seen violence. Alexis’s immune system had turned on her and was attacking her brain.

After almost two years of doctors without answers and nothing more than antibiotics for treatment (which helped to some degree), Penny found out about a new clinic opening in Tucson, Arizona. Part of the Banner – Diamond Children’s Multispecialty Clinic, this new center of excellence would offer experts in the field of pediatric postinfectious autoimmune disorders as well as integrated care.

In other words, hope.

“I was so excited that there might be hope and answers,” said Penny. “We finally had a direction”.

And so they began their 900-mile trip to Tucson, where they would spend a week at the Ronald McDonald House. “The clinic referred us to the Ronald McDonald House, but at first we thought it was only for kids with life-threatening diseases,” worried Penny.

The truth is that RMHC cares for children with any illness or condition that requires medical treatment. There are 28 bedrooms and always a room open for the next family that needs it.

While at the House, they met another family with a young boy, Enzo, who would be attending the clinic for PANDAS as well. The families connected; they shared. They widened their rather small community of friends who truly understood what they were going through. This type of interaction is very common at the Ronald McDonald House – families healing through shared experiences.

While Penny felt cared for and supported, her daughter summed it up best on their ride back home:

“I don’t feel so alone now.”

In times of greatest need, the Ronald McDonald House will always be here for families. Due to the generous support of the Southern Arizona community, families stay for free and are offered a quiet, private, and comfortable room as well as volunteer-cooked meals, transportation to all local hospitals, and perhaps most importantly, TLC for every person who steps through our doors.

For more information about the Tucson PANDAS clinic, visit http://peds.arizona.edu/steele/cpae.