PATIENT STORIES
She suddenly began having unexplained fits of rage and OCD behaviors so severe that she was suspended from kindergarten.
Grace’s Story
Grace was suspended from kindergarten and diagnosed with various mental disorders. Her parents spent their life savings searching for answers.
Mom:
Come unlock the door. [child screaming]
Grace was diagnosed with ADHD, Oppositional Defiant Disorder, and other childhood mental disorders. She didn’t have any of them.
Mom:
She was getting these fevers. She’d get a fever and she would be really sick. But as soon as she was done being sick and the fever would be gone, her behavior would be atrocious.
Grace:
My name is Grace and I'm 8-years-old and I love to play with my parents.
Mom:
She's a people person, a chatterbox, loves to be the center of attention. Even as early as 6 months you could tell she had a sense of humor.
I'll never forget when we got the email that had the results of the Cunningham Panel. Yes, this means this is what she has. We finally know what she has. We could stop searching.
Grace’s parents began searching for answers.
Mom:
She didn't have Lupus. She didn't have Rheumatoid arthritis. She didn't have Bartonella. She didn't have Lyme. She didn't have cat scratch fever. Well, maybe she's allergic to the pets. So we got rid of some pets. Maybe there's mold in the house. We tore out our carpets.
She missed, I think I counted 55, 57 days of kindergarten. And she's got a couple friends but it is difficult for her in that area.
Grace:
I got suspended because I wouldn't let a child get off the bus. I didn't want anyone to sit by me and I didn't want anyone going anywhere. I just felt that way.
Mom:
The doctors we were seeing were trying the best they could but they couldn't find an answer. The test results weren't showing answers. We just kept on searching.
Mom:
What are you doing?
Grace:
Killing myself [rolling around on floor]
Grace’s parents emptied their 401K twice looking for answers. They spent everything they had. And found nothing. [Grace is referred to an immunologist.]
Mom:
We get her in. We do the blood work, get an appointment, get in, sit down with the immunologist. All this stuff she thought it could be and nothing, except she ordered an ASO titer which is a strep titer. The only thing that has any reading and it's really high. I mean it's ridiculously high and she asked,
"She didn't have any behavior issues does she?" And we're like “Yes, she does.”
She said the only thing I think that it might be is PANDAS. She said, "Let's order the Cunningham Panel."
I'll never forget when we got the email that had the results of the Cunningham Panel. Yes, this means this is what she has. We finally know what she has. We could stop searching.
Grace:
Once we started the new med, it changed and helped me and I love it. I'm getting better.
Mom:
She has a lot more happy days. A lot more good days than there are bad days. Now, if she does get sick, we're able to work with her providers, and make whatever adjustments are needed.
Grace:
I wish that the people that have PANDAS like me get better.Mom:
We've got the tools. Let's use them.