Watch Isak’s Story below, a video by his dad, Adam McCune, of Goffstown:
“Our boy, our fighter was stricken with a series of strange ailments around age 3. After nearly four years, we finally found relief for our him. Though he isn’t cured, his good days far outnumber the bad ones. For each child there should be eternal hope. Please, if you know someone going through a similar struggle, contact the PANDAS Network www.pandasnetwork.org
The New England PANS/PANDAS Association will hold a one-day seminar in Bedford, NH, to educate parents, educators and medical providers on P.A.N.D.A.S (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and P.A.N.S (Pediatric Acute-onset Neuropsychiatric Syndrome.) P.A.N.D.A.S. and P.A.N.S. are terms used to describe a subset of children and adolescents who experience an encephalitic-like onset of neuropsychiatric symptoms following an infection such as strep, pneumonia and mononucleosis.
Highly trained medical experts in the field speaking at the event include Dr. Rosario Trifiletti, Dr. Paul Hardy, Dr. Geordi Thomson and Peggy Chapman, Clinical Nurse Specialist. The speakers will cover such topics as: what is P.A.N.D.A.S.; new findings in the disorder; psychiatric medications and behavior interventions that can be used with success in children affected by the disorder; Lyme disease and its relationship to P.A.N.S; and how best to advocate for your child in a medical environment that may not be knowledgeable or supportive regarding this disorder.
The seminar will be held on Saturday, October 11, 2014 at SERESC Educational and Conference Center Services, 29 Commerce Drive in Bedford, NH. Tickets are currently being sold online at www.nepandasparents.com for $45 per person. The event will run from 1-6 p.m. and include talks from the four presenters and ending with allotted time for important questions. Drinks and a snack will be provided. Doors will open at noon with an opportunity to network with other parents before the event begins.
About the photos: The first photo is Isak McCune, around age 3, described in that moment by his dad, Adam McCune as typically curious, happy and smiling. “A normal kid,” says McCune. Less than a year later, the accidental double exposure really captured what his son had become, says McCune: The top photo was just before his first symptoms showed up. The second photo was actually caught on my Holga – an accidental double exposure. It captured the time a little too clearly. The faded image in the background you can see his face – full of worry. Doubt. Anxiety. Conflict, anguish. Less then a year between the pics,” says McCune. “He’s not cured, but the diagnosis means we know what to watch for and to be careful. He’s had an unbelievable year. It’s like he’s back after being lost for four years.”
Children with P.A.N.D.A.S./P.A.N.S. have an encephalitic-like onset following an infection such as strep, mycoplasma (walking pneumonia) and mononucleosis. Antibodies from these illnesses mistakenly attack a part of the brain, resulting in sudden onset of acute, neuropsychiatric behavioral changes that can include one or more of the following symptoms: Obsessive Compulsive Disorder, sensory sensitivities, verbal or physical tics/abnormal movements, age regression, acute separation anxiety, contamination fears, urinary frequency or bed wetting, fear of choking/eating, irritability or aggression, deterioration in learning abilities and/or handwriting, inability to concentrate or ADHD-like symptoms, personality changes, sleep difficulties and/or insomnia, rages and extremely high anxiety.
About The New England PANS/PANDAS Association
The New England PANS/PANDAS Association is a group of parents living in New England whose children are living with PANS/PANDAS. The Association is focused on raising awareness of PANS/PANDAS in their community and beyond, to support the medical community in their mission to heal children suffering from PANS/PANDAS, to look for ways to expand the medical care available, and to create opportunities to assist families searching for solutions. For more information visit their website at www.nepandasparents.com.