anson's 
Story

Age at Diagnosis: ​6 Years Old

Symptoms

• Fever over 102 F

• Peeling Skin

• Red, bloodshot eyes

• Irritability

• Lack of appetite

• Nausea / Vomiting

Anson's Story:

Anson, a healthy, happy 6 year old boy came down with a fever on the evening of Thursday, November 2, 2023. Over the following weekend his symptoms were flulike with high fevers, vomiting, loss of appetite and extreme fatigue. After 3 days of being ill he was seen at his pediatrician’s office where a PA diagnosed him with a run of the mill virus. His symptoms continued to worsen over the next 2 days and he was brought to urgent care when his family became alarmed by his bright red eyes and hands. Urgent care sent him directly to the emergency room with concerns of dehydration. In the ER he tested positive for entero rhinovirus and his family was told to treat with Motrin, Tylenol, fluids and rest. His parents were concerned that he could have Kawasaki Disease based on the redness of his eyes with no discharge, his red hands and the fact that he was on his 5th consecutive day of high fever. The provider in the emergency room dismissed these concerns, did not believe it was Kawasaki’s and did not order bloodwork. 2 more days passed with no improvement. Anson was still unable to keep food down, had stomach pain, head pain, leg pain and constant high fever along with bright red bloodshot eyes. The redness is his hands would come and go. His fatigue was so severe he wouldn’t get out of bed or off the couch at all and would nap for 3-4 hours per day. He also complained of chest pain and that his heart was beating “too fast”. At this point he’d been ill for over a week.

Back to the pediatrician again, as this seemed much too severe to be “just a virus”. Stat bloodwork and a chest x-ray were ordered. The bloodwork showed alarming changes in his white blood cell count and SED rate - still he was only put on antibiotics and diagnosed with an unspecified infection - “probably tonsillitis”. Approximately 11 days after his initial symptoms, Anson began to improve. Only at his follow up appointment when he was already on the road to recovery did his wonderful pediatrician (who up until this point had not seen Anson, as you take who you can get with emergency sick visits) looked at his eyes, prolonged fever and bloodwork results and immediately said “I think he has Kawasaki Disease”. Anson was sent for more stat bloodwork and an appointment for an echocardiogram with a pediatric cardiologist first thing the next morning. The echocardiogram showed everyone's worst fear - an aneurysm of the right coronary artery measuring 4mm, absolutely devastating news. He was finally officially diagnosed with incomplete Kawasaki Disease. Unfortunately as he was now 2 weeks past his initial fever, recovering on his own and heart damage had already occurred, IVIG was deemed to be unnecessary at this point. He was put on daily low dose aspirin and had frequent follow ups. 3 weeks after his first symptoms appeared his hands started peeling, further confirming the Kawasaki diagnosis. His energy level and appetite were finally improving however he did complain of chest pain which terrified everyone.

We had so many sleepless nights. The unknowns of how his heart was functioning after sustaining the damage from this disease made everyone live in a constant state of anxiety. Would his heart heal? Worsen? Would this be something that he’d deal with for his entire life? 3 days before Christmas, Anson had a repeat echo, the longest one yet. Call it a Christmas miracle but the aneurysm was completely gone and his heart function had returned to normal! The doctor had the ultrasound tech recheck multiple times just to be sure. It was better news that we could have ever hoped for. Anson would be able to come off of his aspirin and return to full activities. As soon as we left the office (which happens to be inside of a large shopping mall) we paid a visit to Santa (and the Lego store of course) just so thrilled that this ordeal was behind us and we could finally breathe easier. 5 days later Anson celebrated his 7th birthday, healthy and happy once more.
This whole experience was a parent’s worst nightmare. Not only is being helpless while your child is sick a gut-wrenching feeling, but fearing what has yet to come and envisioning worst case scenarios will turn your world upside down. As cliche as it sounds, you never think it will be your child who is diagnosed with a rare disease that may permanently alter their life. I think it’s important to remember you are your child’s advocate and voice - be pushy. Ask questions. Demand answers. We had a lot of regret that we didn’t insist on further testing when he was initially seen in the ER - the outcome could have been different if he’d gotten a diagnosis sooner. 

Current Condition:

I'm happy to report that Anson is currently back to his silly, energetic self - complete with a healthy heart.