An event scheduled for Sept. 19 will have the dual purpose of raising awareness for an autoimmune disorder called PANS/PANDAS and helping secure the needed ongoing treatment funds for 10-year-old Coweta County resident Neely and his sister, 6-year-old Lucy. The second Annual PANS/PANDAS Family Fun Day will be held at the Rowland Road Pavilion in Brooks.
Dr. Susan Swedo first identified PANDAS in 1998 and in 2012 modified the PANDAS criteria to include PANS. PANS/PANDAS remain largely unrecognized and undiagnosed by many physicians.
However, in January 2015 the JCAP (Journal of Child and Adolescent Psychopharmacology) released the first collection of research paper on PANDAS/PANS written by a Consortium of researchers and physicians.
“Most people haven’t heard of it, nor have many doctors. And if they have they are reluctant to diagnose or treat it because they don’t know enough about it or because they have never seen it first-hand,” said mom Heather Ward. “It’s complicated, really complicated. It’s hard to comprehend, diagnose and treat. And it’s a living nightmare for the child affected by it and for the entire family.”
Simply put, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) occurs when strep triggers a misdirected immune response resulting in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing neuropsychiatric symptoms such as OCD, anxiety, tics, personality and mood changes, sudden unexplainable rage and fight or flight behaviors, irritability, aggression, severe oppositional behaviors, decline in math, handwriting and art abilities, inability to focus, sensory or motor abnormalities, age-inappropriate behaviors, sleep disturbance, urinary frequency, enuresis and restrictive eating based on fears such as being poisoned, choking or throwing up..
The onset may be up to 4-6 months after the strep infection if antibiotics do not fully eradicate the bacteria, according to the PANDAS Network.
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) can be triggered by any infectious agent (NOT only strep), environmental factors or other triggers creating a misdirected immune response resulting in inflammation on a child’s brain causing the same or similar symptoms as PANDAS. The difference in PANS and PANDAS is that PANDAS is connected to a strep infection and PANS can come from other infectious or environmental triggers. They also have a slightly different diagnosing criteria.
“For most parents and families the sudden onset of these symptoms are undeniable and can send a family reeling and frantically searching to figure out what has happened to their child,” Ward explained.
While a number of different treatment methods have been attempted and proven unsuccessful, the family was at the point of needing an intravenous blood product (known as IVIG) that is regularly given to children and adults who have certain autoimmune illnesses.
There are no doctors in Georgia from whom the IVIG treatment can be obtained at this high dose for PANDAS. Beyond that, said Ward, the cost associated with treatment is not covered by insurance. Given that, it became necessary for the Ward family to travel to Chicago for treatment because Neely’s local doctor works with a physician in Chicago who has successfully treated the condition.
The cost of the IVIG treatment, associated medical fees and travel was $16,000 for each of the two trips to Chicago.
Neely’s first trip was in March 2014, followed by another in December.
The result of Neely’s first IVIG treatment was positive and pronounced, Heather said. He came off stimulants, non-stimulants, antidepressants, antipsychotics and incontinence medications, she said.
“He did well until school started,” said Heather, noting that Neely began getting sick every couple of weeks. “So we repeated the IVIG at nine months and since then he’s had the flu and strep but he’s playing baseball again for the first time in two years and is interested in normal 10-year-old things.”
Neely still has setbacks, but with everything that has happened, and with missing 55 days of school last year, Heather says Neely is progressing.
Scott and Heather Ward have two other children, 6-year-old Lucy (who also has PANS/PANDAS) and 3-year-old William.
Heather said Lucy has experienced PANDAS-related flare-ups during times of illness but, to date, Heather and Scott have been successful in using a number of measures to mitigate the flare-ups.
As for additional IVIG treatments needed for Neely or perhaps for Lucy, only time will tell.
But there are other ongoing expenses.
“Currently, we have three terrific local doctors who are helping us ‘manage’ the disease,” said Heather. “Along with that comes monthly medications, doctor visits, blood work and testing.”
Aside from the concerns arising from PANDAS, Heather has become somewhat of a clearinghouse for the parents of children with PANDAS by providing information and assistance, from a parent’s perspective, on issues such as diagnosis and available resources.
The effort behind the fundraiser is not only to help offset the expense of medical treatment, but to eventually help other families with needed expenses and to continue to raise the awareness of this often-misunderstood autoimmune disorder.
The PANS/PANDAS Family Fun Day will be held Saturday, Sept. 19, 10 a.m. until 4 p.m. at the Rowland Road Pavilion in Brooks. Activities will include Magician Ken Scott, meet and greet with Elsa (Frozen), the Line Creek Blue Grass Band, a silent auction, laser tag, inflatables, games, kid crafts, face painting, “Crazy Hair,” food and more. There will be vendors such as Mary Kay Cosmetics, Premier Jewelry, Origami Owl, Rodan & Fields, Perfectly Posh, LuLaRoe and Boy Scout Pack 58. Tickets are $10 per person or $50 maximum for the family. Kids under age 2 are free. Ticket prices include all activities for the kids.
Event organizers are asking for those interested to consider becoming sponsors. Sponsorships are priced at various levels from $250 to $1,000. Also needed for the event are in-kind donations and silent auction items. Vendors and volunteers are also needed and encouraged to contact Heather Ward at 404-227-5341 or at firstname.lastname@example.org
Current sponsors for the fundraiser include North Georgia Concrete, Brent Scarbrough & Co., The Citizen Newspapers, Fayette Woman Magazine, Whitlock Ellis Wealth Management, Chatfield Contracting, Sutherland Foods, Coweta Equipment Rental, Jason Mask & Co., Signarama, Tactical Smoke, Georgia Outdoor Laser Tag, PANDAS/PANS Advocacy & Support, Pro Health Physical Therapy and Pilates Studio, Dorothy Nicole Photography, Senoia Drug Company, Club Z In-Home Tutoring Services, Heart is Found Photography, BB&T and Peachtree Pediatric Dentistry.
Tickets can be purchased the day of the event or online at www.fightingpansandpandas.com/product/family-fun-day-ticket/ or by emailing email@example.com
To locate the pavilion from Senoia: take Ga. Highway 85 North, turn right on the Hwy. 85 Connector (by Landscape Nursery), travel about 3 miles and turn left onto Woods Road; travel approximately a mile and turn left on Kelly Road (dirt road – comes in at 45 degree angle), travel approximately one-third mile and turn right onto Rowland Road (dirt); the entrance is approximately 125 yards on the left with a wooden fence with gate.
To locate the pavilion from Fayetteville: take Hwy. 85 South, turn left on the Hwy. 85 Connector, travel approximately 3 miles and turn left onto Woods Road; travel approximately a mile and turn left on Kelly Road (dirt road – comes in at 45 degree angle), travel approximately one-third mile and turn right onto Rowland Rd (dirt) and the entrance is approximately 125 yards on the left with a wooden fence with gate.