Nolan’s Story

This is Kawasaki disease in Canada.

24/01/2019

In March 2017, we became a Kawasaki disease family.

Nolan had just turned 4 years old in January. He started to present with a slight fever on day 1, but he was still doing quite well and it seemed as though he was just fighting a little virus. The next day, the fever persisted and did not let up. In addition, his eyes started to get quite red. But again, I thought it was a virus and it was just taking its course. We gave him some Tylenol to help with his fever. He was still seemingly doing okay and he still had some energy to get through his day at home. On day 3, Nolan was quite a bit worse. He was lethargic and extremely thirsty. His appetite started to diminish, he was pale, no energy…almost like he was dragging himself around. He was walking in a way that reminded me of an arthritic elderly person. Very weak, very slow. I decided to take him into a walk-in clinic. The doctor there concluded, without a swab 🙁 that Nolan had strep throat and prescribed antibiotics. We administered that evening. I was hopeful that we would see a little glimmer of progress in the morning. Day 4 rolls around. Fever still present, overall symptoms are worse. Very, very red eyes, very weak, fever, very sore and tender, swollen glands in the neck area. I was thinking it was “mono,” but I didn’t think children could get mono at such a young age. I gave Nolan his morning dose of antibiotics…..he threw it up immediately. At that moment, I knew something was very wrong. I immediately packed a bag and took Nolan to our local emergency and urgent care clinic. The attending ER doc was also considering Nolan’s symptoms as viral, but he said that Nolan did have some signs of Kawasaki disease and it’s worth checking it out. I had no idea what that was. At this point, Nolan also had the beginnings of the classic “strawberry tongue” symptom.   We were sent to have a chest X-ray at urgent care. The ER doc called Triage at the neighbouring children’s hospital and told them to admit us right away. The team there ran all the diagnostics that they could and they concluded that Nolan indeed had Kawasaki disease. We were officially admitted into the hospital and that night Nolan was given IVIG and high dose Aspirin. This was closing our 4th day. On the 5th day, all the diagnostics (echo and ECG) showed dilatation of his arteries. That night his fever finally broke. We rejoiced!!! But he still had a few more days in the hospital to complete the treatment. On the 6th day, his fever spiked again for a brief time in the morning, we monitored it, and it seemed to come back down on his own:). Nolan was eventually discharged from the hospital and was given a low dose Aspirin to take for 6 weeks. We followed up with an echo and ECG at the 6-week mark. It showed no damage and no more dilatation in his coronary arteries. He has since made a great recovery, but our family had been greatly affected by this and push a lot to get Nolan’s case followed annually. So far, all diagnostics show that he is doing okay.

I am so grateful to the ER doc who took the extra step and requested that the hospital look to rule out Kawasaki disease. If it wasn’t for him, the trajectory of the disease could have been much, much worse.

Hope this helps raise awareness!

Blessings,

Natalie

 

 

**Opinions expressed are those of the parent who submitted this story.

Brett’s Story

This is Kawasaki disease in Canada.

22/01/2019

This is Brett’s story, as told by his mother, Stacey.

It started with a low fever and a lot of sleeping back in March 2015. With Brett being our third little boy, we have seen our share of viral infections, so we waited for it to pass. After a few days of the fever hanging on, we headed to the medi-centre. Another patient noticed a bit of a rash on his leg when his pant leg lifted a bit. I mentioned it to the doctor since we were already there, but we were sent home to wait out what looked like a virus. By that evening, we noticed that the small rash had spread up his leg and the fever had gone over 40C. We called Health Link (a free health advisory service in Alberta) for a recommendation the next day and were advised to stay home and booked an appointment with his paediatrician in a few days (the soonest available). Brett had stopped eating and was very lethargic on day 3, so I took him to our closest emergency room. We waited a few hours in the emergency waiting room and he perked up and seemed hungry, so I took him home without seeing a doctor. The next day we saw his paediatrician who mentioned Kawasaki disease. I Googled it and proceeded to panic. That doctor sent us to the children’s clinic in the city. Again, after hours in the waiting room, they checked him out and sent us home to wait out the virus. He had now had a fever over 40C for 4 days, hadn’t eaten anything, and was covered in a rash that kept moving all over his body. It was day 5 when his lips and tongue started cracking and bleeding that I went back to the children’s hospital and as kindly as I could manage, said that I wasn’t leaving until they found out what was wrong.

As it turns out, 5 days of high fever is the magic number to diagnose Kawasaki disease. He was given fluids by IV and on day 6 was given the IVIG treatment. Within minutes (or so it seemed) after the treatment, he was awake and hungry! They monitored him every 15 minutes for a few hours, but the fever had broken. I am forever thankful for the doctors and nurses at Stollery Children’s Hospital for not sending me home that night. Brett continues to have skin issues that I think might be related, but has had 5 years of clear ECGs and ultrasounds and has been cleared of any complications.

 

**Opinions expressed are those of the parent who submitted this story.

Liam’s Story

This is Kawasaki disease in Canada.

20/01/2019

This is Liam’s story, as told by his mother, Janet.

He was born in 2004 with a healthy heart. Liam is now living with the most serious heart complications due to Kawasaki disease (KD). In July of 2006, he was diagnosed with KD. As a result, Liam has many coronary aneurysms. Children with coronary aneurysms are faced with a lifetime of medication and increased risk of blood clots, stenosis, ischemic heart disease and premature atherosclerosis, increasing the risk of heart attack.

In summer 2009 he went for his angiogram where they insert a catheter into his groin to see if the giant aneurysms have changed, if there are any blood clots, and do a nuclear stress test — a test he has endured on four occasions. Within 15 minutes the cardiologist came back and told us he could not complete the stress test. It was too dangerous. Liam had stenosis (narrowing of the arteries) and a blood clot in the aneurysm. Surgery was our only option. Five days later he had coronary bypass surgery. They rerouted the mammory artery within his chest to replace the damaged coronary. The surgeon later told us the artery was very small, his arteries were quite damaged and that scar tissue on the heart indicated he had suffered a heart attack. Statistically the outcome looks good, but his future is unknown.

His cardiologist indicated there are three things that will continue to impact his outcome. He needs to lead an active healthy lifestyle, stay well anticoagulated, and go for regular checkups — currently every 6 months.

Liam takes high dose anti-coagulant medication (Coumadin) in addition to Lipitor, Aspirin and a beta-blocker. He will be on heart medication for the rest of his life. Children with acquired heart disease will never be able to participate in contact sports, experience roller coasters, ski nor do any other high-risk injury activities most young people enjoy participating in.

Liam is now a thriving 14 year old!

 

**Opinions expressed are those of the parent who submitted this story.

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