Every story is different… Selena Tabscott, the mother of Lukas, shared her son’s story with us.
It was horrible trying to find a doctor with the experience to give an official diagnosis of Kawasaki Disease. We kept hearing “well, it presents like Kawasaki, but he isn’t Asian”. He was first diagnosed with the flu and pink eye. Then with a respiratory infection (without any symptoms) and he was given IV antibiotics.
After the first mention of Kawasaki Disease, I was immediately researching from my phone, but his symptoms didn’t present exactly as the information I found. Our biggest frustration was having one doctor mention it, then the next brushing it off as it being too rare and not likely the cause. We felt as though nobody wanted the responsibility of diagnosing him. We knew something more was happening than just the flu, but it was a struggle to get the doctors to take action. After two trips to urgent care, two different hospitals, and numerous doctors, he was finally diagnosed on day 8 from Randall Children’s Hospital in Portland, OR. He was so miserable and weak he wouldn’t even stand on his own and was unable to eat or drink. By the time he was diagnosed his heart had very wide arteries. His treatment included one treatment of IVIG and aspirin. We saw improvements within hours and after 6 weeks his arteries looked to be safe and normal.
I’d like other parents to know the signs and symptoms of Kawasaki Disease and how important it is to take action as soon as possible if it is suspected. The one piece of advice, be your child’s advocate. Don’t be afraid to demand that the next step is taken, or the next test is run ASAP, instead of “waiting it out”. We almost missed the 10-day window because our doctor was on vacation and the staff wanted to see how he did over the weekend. Our special thanks go out to our families (both mom and dad sides) for holding us up when we needed it most.
Keep Lukas and his family in your thoughts and prayers as he has a follow up with a cardiologist this coming November. We are all here for you Lukas and will continue to raise money for a cure, to spread awareness and help support those affected by Kawasaki Disease because of you! Help us fight this battle around Kawasaki Disease, donate today.