Help for Louis
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Update - At the moment we are pausing this fundraiser. We are extremely blessed to have a family member's generosity that will take us the rest of the way toward paying for Louis's first two IVIG treatments. We hope that successful initial treatments will help us get insurance coverage for future IVIG . Louis should be able to start treatment about a week from Tuesday. We are beyond grateful for everyone's support, and for so many words of encouragement and compassion. Louis is excited to begin his IVIG journey. We will keep everyone updated on how he's doing after treatment.
-Sarah, Brendan, and Louis
In mid-October of last year, our family's waking nightmare began when our sweet Louis, nine years old, walked into our bedroom and threatened to kill himself.
Louis's mental health rapidly declined over the course of the next few weeks. He started banging his head and hitting himself violently, running away from home - behavior we had never seen before. We would spend hours physically restraining him to prevent harm. We were forced to hide all our kitchen knives. We had to keep him away from the stove when cooking so he wouldn't succeed in burning himself. On Christmas Day, we were grateful to bring him back home safely after a terrifying chase along a busy road outside our neighborhood. We spent nights sleeping in front of the bedroom door to keep him safe. We installed indoor locks. We couldn't even leave the house and drive without having to thwart Louis's attempts to escape from the moving car.
On the advice of Louis's therapist, Louis was evaluated by a doctor and quickly diagnosed with PANS/PANDAS, a rare auto-immune disorder that causes brain inflammation and severe and sudden psychological changes in children. When he was diagnosed he had four active infections, and physical symptoms of none of them...no sore throat, no fever, no pain...only dialated pupils and headaches from an inflamed brain, and severe psychological symptoms.
This diagnosis was the start of a difficult journey to not only keep Louis safe but also get him the treatment he needs to get better. We have consulted with four different doctors, all the while trying in vain to get Louis an appointment with the hopelessly overbooked PANDAS team at Children's Hospital in DC.
Since beginning treatment, Louis has made modest improvements. The scariest moments occur less often now. But Louis has been unable to attend school, forcing us to enroll him in the county's Hospitalized and Homebound program. He has lost most of his friends, and without further improvement, we don't know when he will be able to return to the classroom. All Louis wants is to have a normal life again, to regain the childhood that has been stolen from him.
While PANDAS is a relatively rare condition and medical understanding of it is still evolving, the research and the medical professionals we have seen point to IVIG treatment as the best hope for significant improvement in Louis's symptoms. IVIG involves a series of transfusions that would help "reset" his immune system and allow his brain work normally again.
Unfortunately, it is very difficult to get insurance companies to cover PANDAS treatment. We tried to get Louis enrolled in a study that would have provided him with IVIG treatment, but unfortunately the study's requirements were very narrow and Louis ultimately did not qualify. Since then, we have been engaged in a long struggle to get insurance to pay for his transfusions, but we have not met with success thus far.
We don't want to ask Louis to have to wait months longer for the treatment he needs while the slow wheels of bureaucracy turn. He has fought hard to get better, but he is worn down by the fight and he talks more and more about his fear that he'll never get back to normal.
We are fundraising for the cost of Louis's first round of IVIG. Every day we wait as we continue to battle insurance reduces the chances of Louis's brain ever recovering from the trauma of the past year- and increases the chances of his remaining fully disabled or worse.
We truly appreciate any help that you can give, no matter how small, and encourage everyone - especially teachers and medical professionals to read up on PANDAS. This shouldn't have to happen to another family.
PANDAS resources -
Resources for Educators, the PANDAS Network:
NIH Overview of PANDAS:
My Kid Is Not Crazy, A search for hope in the face of misdiagnosis:
Organizer
Sarah Graves
Organizer
Tampa, FL