Ansley's PANDAS IVIG treatment
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My niece, Ansley, has always been such a joy to our family. She is full of life, energy and confidence. But, when she entered kindergarten, things started to look a little different for Ansley. She struggled to complete her work in school and stay on task when given things to do.
At home, my sister (Stephanie) and brother-in-law (Jason) noticed that she wouldn't go upstairs or into other parts of the house without them.
In first grade, Ansley was officially diagnosed with ADHD and began seeing a psychologist for her anxiety. She made it through first grade and seemed to be excelling academically. But during the summer before second grade, she began having extreme anxiety and OCD behaviors. She washed her hands so frequently that a bottle of hand soap would last only three days. After washing her hands, she turned the faucet off with such force that Stephanie and Jason thought she might actually break it. She constantly lunged around the house and tapped on the tables and turned lights on and off repeatedly.
That fall (2016) they went back to the the psychologist. Ansley was not eating well, her test scores were 40 points lower than the previous year, and her handwriting was illegible. The psychologist diagnosed Ansley with OCD. She was tormented with obsessive thoughts and compulsions to do certain things. "Is it okay?” always came out of her mouth before she did anything. She was afraid of certain foods, touching dirty things, and breathing around things she perceived as contaminated.
The night that she was diagnosed with OCD, Stephanie, by the grace of God, went home and did a Google search: "7-year-old and OCD.” Little did she know that she was about to stumble upon Ansley’s true diagnosis- PANDAS. PANDAS stands for Pediatric Autoimmune Neuropsychiatrc Disorder Associated with Strep. Essentially, PANDAS occurs when the Strep virus passes the blood brain barrier and results in inflamation of the brain. This causes the child to exhibit life-changing symptoms. As Stephanie and Jason read about the symptoms of PANDAS (sensory sensitivities, decline in academic ability, poor handwriting, anxiety, dilated pupils, emotional lability, restrictive eating) things began to fall into place in their minds. They completed a diagnosis check-list, and were able to check almost all of the boxes as it pertained to Ansley and her behaviors. Stephanie immediately made an appointment with their pediatrician, who ran blood tests and diagnosed Ansley with PANDAS.
Since then, they have seen neurologists, an immunologist, really anyone who would listen and attempt to help. For the past year and a half, Ansley has been on and off antibiotics and steroids with minimal improvement. In July, she had her tonsils removed (the culture on the tonsils showed that they had staph infection). After seeing a specialist in DC, she has advised that Ansley move forward with the next step toward healing- IVIG (Intravenous Immunoglobulin)*. This is a rigorous treatment that will work to replace and renew Ansley’s immune system. The hope is that IVIG will remove the harmful antibodies within Ansley’s immune system and that she will return to the carefree girl that she used to be.
*[Currently, a majority of insurance providers do not cover treatment for PANDAS. Ansley's doctor wants her to have IVIG as soon as possible in order for her immune system to be stronger before the start of the school year. All that being said, the cost of the treatment is entiredly out of pocket and we have a short window to raise the funds. So, thank you for heart and support for Ansley, Stephanie and Jason as they walk this road.]
To learn more about PANDAS, visit http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/.
At home, my sister (Stephanie) and brother-in-law (Jason) noticed that she wouldn't go upstairs or into other parts of the house without them.
In first grade, Ansley was officially diagnosed with ADHD and began seeing a psychologist for her anxiety. She made it through first grade and seemed to be excelling academically. But during the summer before second grade, she began having extreme anxiety and OCD behaviors. She washed her hands so frequently that a bottle of hand soap would last only three days. After washing her hands, she turned the faucet off with such force that Stephanie and Jason thought she might actually break it. She constantly lunged around the house and tapped on the tables and turned lights on and off repeatedly.
That fall (2016) they went back to the the psychologist. Ansley was not eating well, her test scores were 40 points lower than the previous year, and her handwriting was illegible. The psychologist diagnosed Ansley with OCD. She was tormented with obsessive thoughts and compulsions to do certain things. "Is it okay?” always came out of her mouth before she did anything. She was afraid of certain foods, touching dirty things, and breathing around things she perceived as contaminated.
The night that she was diagnosed with OCD, Stephanie, by the grace of God, went home and did a Google search: "7-year-old and OCD.” Little did she know that she was about to stumble upon Ansley’s true diagnosis- PANDAS. PANDAS stands for Pediatric Autoimmune Neuropsychiatrc Disorder Associated with Strep. Essentially, PANDAS occurs when the Strep virus passes the blood brain barrier and results in inflamation of the brain. This causes the child to exhibit life-changing symptoms. As Stephanie and Jason read about the symptoms of PANDAS (sensory sensitivities, decline in academic ability, poor handwriting, anxiety, dilated pupils, emotional lability, restrictive eating) things began to fall into place in their minds. They completed a diagnosis check-list, and were able to check almost all of the boxes as it pertained to Ansley and her behaviors. Stephanie immediately made an appointment with their pediatrician, who ran blood tests and diagnosed Ansley with PANDAS.
Since then, they have seen neurologists, an immunologist, really anyone who would listen and attempt to help. For the past year and a half, Ansley has been on and off antibiotics and steroids with minimal improvement. In July, she had her tonsils removed (the culture on the tonsils showed that they had staph infection). After seeing a specialist in DC, she has advised that Ansley move forward with the next step toward healing- IVIG (Intravenous Immunoglobulin)*. This is a rigorous treatment that will work to replace and renew Ansley’s immune system. The hope is that IVIG will remove the harmful antibodies within Ansley’s immune system and that she will return to the carefree girl that she used to be.
*[Currently, a majority of insurance providers do not cover treatment for PANDAS. Ansley's doctor wants her to have IVIG as soon as possible in order for her immune system to be stronger before the start of the school year. All that being said, the cost of the treatment is entiredly out of pocket and we have a short window to raise the funds. So, thank you for heart and support for Ansley, Stephanie and Jason as they walk this road.]
To learn more about PANDAS, visit http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/.
Organizer and beneficiary
Erin McClain
Organizer
Charlotte, NC
Stephanie Zak
Beneficiary
