We hope to help create a future with improvement of diagnosis, treatment, and quality of life. Charlotte "Bear" Lavin's Story
**Medical Professionals names removed for privacy**
PI has recently become a personal issue to my family since my daughter, Charlotte “Bear” Lavin, was diagnosed with Specific Antibody Deficiency with normal IgG (SAD) in November 2016. Charlotte’s diagnosis took over four years—with a lot of testing and failed treatments—to get the proper diagnosis. Charlotte first began showing signs of the disease at only two months old, when she was diagnosed with pneumonia. Moving forward, Charlotte would recover from an illness and shortly after, contract another illness. As she approached one year old, we felt like the amount of illnesses (including two pneumonias) was not “normal.” We were getting very frustrated with doctors saying “it’s just kid stuff.” We decided to move practices. Dr. ** became Charlotte’s pediatrician. A nurse called me shortly after the appointment was made and told me Dr. ** would see Charlotte before her new patient appointment, because he knew we were nervous about her illnesses. Throughout the many doctors and specialist visits, Dr. ** has been Charlotte’s constant and consistent advocate since she was one. In November 2016, Charlotte finally received a proper diagnosis—SAD—from Dr.**. We tried a new prophylactic antibiotic that failed quicker than any treatment thus far. February 2017, Dr. **, Dr. **, and Dr. ** all agreed it was time for IVIg. Since there are no local pediatric immunologist, Dr. ** and Dr. ** at Bleeding & Clotting Disorder Institute agreed to take Charlotte on as a patient. They worked with OSF Children’s Hospital of Illinois to have her approved for her first infusion within three days. Since March 2017, Charlotte has been a completely different child. She has not needed antibiotic or steroids once since beginning IVIg. The first time she went back to Dr. ** and **, NP, was May 19. They were shocked to see how much different she looked. Her coloring was better and she no longer carried the dark circles under her eyes. Dr. ** came into the room and took one look and had the biggest smile on his face. It brought tears to my eyes, because I feel this man is solely responsible for how my child is today. Without the referral to Chicago and Dr. **’s consistent searching, Charlotte would not be where she is today. She would not be playing, going to school, be on a cheerleading team, and living a normal kid life. Her three hour infusion, once a month has done that for her. She is no longer on a special diet (gluten free) and she is no longer on daily asthma medication. Charlotte and I also began to look at photos of other kids and adults getting infusions. Here, we were connected with Immune Deficiency Foundation (IDF). I contacted them shortly after and we decided we wanted to help. Primary Immunodeficiency needs help. We need to spread awareness of over 300 rare, chronic disorders, so that these patients can receive a quicker and more efficient diagnosis. Even after diagnosis, I’ve had a doctor tell me that SAD isn’t a real condition. It’s not fair to the patients or their families fighting this battle every day. Please help kids, like Charlotte, and adults fight their battle. Let’s spread awareness about these disorders; we need to create a better future for PI.
