It is with a heavy heart that we have reached the point where we need to reach out and ask for help...
Chase has a rare autoimmune disorder called PANS/PANDAS.
It is also known as “Autoimmune Encephalitis” (Autoimmune triggered inflammation of the brain).
PANS is short for “Pediatric Acute-Onset Neuropsychiatric Syndrome” with a broad spectrum of infectious triggers with a subset disorder termed PANDAS “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections” with strep being the sole trigger.
Our son Chase is a "typical 7-year-old-boy" going through a not-so-typical-childhood. He has a beautiful heart- he is kind, loving, funny and filled with endless energy. He brings so much joy into this world and is a compassionate soul. The flares he suffers from because of this horrible autoimmune disorder are stealing his childhood from him and have been a living nightmare for our family for the past couple of years. We are desperate for help to get him to a specialist for treatment and recovery (please see bold "fund use" paragraph at the bottom of the page for reason and details for this fundraiser).
This autoimmune disorder causes his immune system to overreact in response to illness and his own antibodies attack the basal ganglia of his brain causing brain inflammation that in turn causes “Psychiatric Flares” with weeks to months of acute-onset psychiatric symptoms ranging from OCD (Obsessive Compulsive Disorder), verbal and motor TICS, Anxiety with phobias, sensory processing disturbances, severe separation anxiety with school refusal, frequent urination, sleep disturbances, eating restrictions/anorexia, personality changes with age regression and academic regression in reading, writing or math skills.
These “PANS Flares” disrupt our home and family life immensely. One day he is a typical functioning happy kid the next he gets a fever/virus/sore throat and the following weeks to months he is a different child with debilitating and crippling anxiety, depression and most independence lost. Documented PANS triggers for him have been Lyme, H1N1 Flu, Mycoplasma Pneumonia, Coxsackie (Hand foot and Mouth), random GI bugs/colds, and most recently Strep with Scarlet Fever. After the flare he usually slowly returns to normal but never 100%- he always remains with a few mild “quirks” that stick with him following each episode.
Following two years of PANS flares connected to illnesses we have finally been referred by his pediatric psychologist and accepted into the Yale Child Study Center for PANS/PANDAS- we are in the process of getting an appointment but facing long waits and insurance battles. Unfortunately, due to the “newness” of this diagnosis there are only a small group of specialists nationwide that are experts in PANS/PANDAS and actually treat this disorder. Visits to them and the treatments available are expensive and not covered and rarely reimbursable by insurance. Long term antibiotics, low dose SSRI’s, Naturopathic/Homeopathic immune healing, Steroids and expensive IVIG infusions are in trials now. Because I have been unable to go back to work due to his disorder we do not have much financial means for out of pocket costs for these expensive and controversial treatments and dealing with the unpredictable and debilitating flares leave our home life often filled with chaos and in a constant fear of the next illness and flare.
GOFUNDME FUND USE: It feels very vulnerable and has been incredibly hard for us to consider a GoFundMe to ask for any kind of help... this is our last resort. We are hoping to find the funds through fundraising so that we will be able to afford to make the out-of-state trip to a PANS PANDAS Specialist who is world-renowned for helping children like Chase into recovery (families fly their children to see these specialists from all over the country). We know only a PANS PANDAS Specialist can help our son and provide the correct approach and treatment needed for recovery and maintenance care throughout his childhood. The initial consultation with a specialist ranges from $800 to $1200 with special genetics and antibody/immune function labs of approximately $1,500.00, follow-up appointments for medication management and relapsing flares to new illness ranging from $300-$500 dollars per subsequent appointment, cost of long term antibiotics, antivirals, vitamin therapy for immune system and last resort expensive ($8,000-15,000$ per infusion) IVIG (Intravenous Immune Globulin infusions) to “reset” the immune system/immune response if less invasive treatments are not sufficient. While we are hopeful that our possible upcoming appointment YALE Child Study Center may provide documentation and “official diagnosis” necessary for insurance battles/applying for grants/funding for treatments, it is not yet set in stone and they will not provide the specialized treatment needed to help our son recover. To do that we need to be able to travel out of state to a Pediatric Neurologist/PANS PANDAS Specialist. Any funds generously donated here from family, friends, strangers, will go directly toward Chase’s medical bills for specialists and treatments not covered by our insurance as we fight this rare pediatric disorder. We are humbled by the outpouring of love, support and prayers we have already received since sharing our story. We know that with this team we have behind us we can move mountains for our son and get him the help he so desperately needs. We thank you from the bottom of our hearts.
*I chose this picture of Chase to share because it makes me smile to see him happy and it also can explain a bit of what he goes through. This photo was taken on a Saturday morning following THE WORST PANS FLARE we ever experienced (March 16th- 25th 2017) that included 9 days straight of severe overnight acute-onset Contamination Obsessive Compulsive Disorder following a few days of an upset stomach and sore throat- For almost 2 weeks he suffered from debilitating panic attacks, washing his hands hundreds of times a day until they were bleeding, he wouldn’t hug us, wouldn’t eat anything that had been near or made with anything that was at one point raw, he demanded all food packages to be wiped clean before he would eat what was inside and he wouldn’t touch his pets out of fear they would contaminate him- he wouldn’t even hug his little brother. He woke up on day 9 and scooped up his 12-year-old beloved cat like nothing had happened. It was 9 days of hell for our family but seeing him touch his cat again and smile was the best gift in the universe. This flare prompted us to see professional medical help and almost included and hospitalization if it weren’t for the wisdom of a wonderful pediatric psychologist who suspected PANS/PANDAS to be the culprit (it connected lots of dots after learning about this disorder and we realized that he had been suffering from this for quite a few years but hadn’t become severe enough for us to make the connection). We waited out the storm and he recovered well from that scary flare (about 95% well, never quite back to his baseline prior to the illness and flare). Since, he has had a normal half a year until his latest flare following Strep and Scarlet Fever this past labor day 2017. We are still dealing with horrible and debilitating flares that pop up in between antibiotics regiments (that we have to fight to get from general practitioners) while we await an appointment with a specialist.
(Illinois is one of the first states to sign “Charlie’s Law”, a bill signed in 2017 that will expand coverage for PANS/PANDAS treatment by insurance in that state. We are hopeful that this will influence other states to follow suit so families like ours aren’t suffering years of misdiagnosis and incorrect treatment, inability to see specialists/afford treatment due to lack of insurance acceptance etc. Many PANS/PANDAS children are misdiagnosed and mistreated for years due to lack of education on this disorder leaving their chances of successful treatment and recovery poor due damage done from untreated inflammation and side effects of multiple psychiatric medications that are often ineffective.)