Josie’s story

This is Kawasaki disease in Canada

05/01/2019

This is Josie’s Kawasaki disease story as told by her mother, Tricia.

2012

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Day 1 Jan 24 – Amherst Hospital

Fever of 104 and sore neck. The doctor gave us med’s for a lung infection after doing an X-ray.

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Day 2 Jan 25 – Sackville Hospital
Second trip to outpatients as she wasn’t feeling any better. Her temp wouldn’t stay down, her neck hurt, she had a rash on her stomach and her upper back was red and swollen. They tested her blood and didn’t seem to be too concerned. The doctor also looked at the x-ray from the previous hospital and didn’t see any issues with her lungs. The doctor advised to continue with meds for another 24-48 hours to see if there were any signs of improvement; if not come back.

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Day 3 Jan 26 – Moncton Hospital
Back to outpatients as her rash had spread to her legs and she was complaining of pain; so much pain that she couldn’t have anything touch them. The doctor thought she might have adenitis (inflammation of lymph nodes) and suggested continuing with meds prescribed for a lung infection.

Advil working to keep the pain manageable.

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Day 4 Jan 27 – Family Doctor
Still no signs of improvement. We went to our family doctor this morning. He agreed with the adenitis diagnosis. He also thought she was having been having an allergic reaction to the meds that she was given Tuesday. If her temp is still up by morning were to bring her back to outpatients.

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Day 5 Jan 28 – Moncton Hospital
Still no signs of improvement, so back to outpatients. It was a complete waste of time. The doctor told us to wait for another 24 hrs and he would check her again tomorrow.

We are tired & stressed out at this point.

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Day 6 Jan 29
No change. We decided to wait until tomorrow and call our family doctor.

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Day 7 Jan 30 – Admitted to Moncton Hospital
The family doctor said there was nothing he could do and that it was best to bring her back to outpatients.
Thanks to the triage nurse that was working (the same nurse we saw on Day 3) we were seen by a doctor right away. If it wasn’t for her I think we would have been pushed away as before with no real answers.

This doctor ran several tests, he took the time to listen to me and look at the pictures we’d been taking of her rash. Based on what I had told him and the results from her blood work he suspected one of three things: serum sickness, juvenile rheumatoid arthritis, or Kawasaki disease. He called for a pediatrician and admitted her.

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Day 9 Feb 1 – Moncton Hospital
The pediatrician ordered more tests. Her thought was that she might have had a bad reaction to meds that would take weeks to get out of her system. Nothing concrete to go on.

Advil is used to keep the pain and swelling down.

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Summary of the week so far: Josie had a fever of about 104 and a sore neck last week, so I brought her to outpatients where they gave her Cefprozil for a chest infection (which she didn’t have). We went to outpatients 3 days in a row, all doctors told me something different, but to keep giving her the meds. Finally went to my family doctor who said she was allergic to the meds and that’s what was causing the rash. So we stopped, but then she got worse. She couldn’t walk, she wasn’t eating, she was swelling up, still had a sore neck and fever. I brought her back to outpatients 2 more times before they finally admitted her. They think she has serum sickness. We are still doing more tests.

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Day 11 Feb 3 – Moncton Hospital
No signs of improvement. The doctor thought she had atypical Kawasaki disease as she has had all of these symptoms at some point over the last 11 days: fever, sore and swollen lymph nodes, bloodshot eyes, peeling feet, red cracked lips & a rash. Her blood work was also pointing to this, so the doctor ordered IVIG (intravenous immunoglobulin). This process took about 8 hours and we were told that she should show signs of improvement by the next day.

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Day 12 Feb 4 – Moncton Hospital/IWK
The IVIG gave her a headache. They gave her Tylenol to help with the pain and baby aspirin to thin her blood.
Waiting to see if the transfusion worked.

Josie was pretty miserable today. The doctor wanted to monitor her over the weekend as there were no signs of improvement.

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Josie’s platelets went up today to a scary high #, her ESR (erythrocyte sedimentation rate – a test that indirectly measures how much inflammation is in the body) went up to 137, and she started getting a temperature again. We were hoping for better results after the IVIG last night.

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This is concerning as the Kawasaki disease affects the heart. So, we are now at the IWK, waiting for tests to be done and another ECHO cardiogram.

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Day 13 Feb 5 – IWK
Josie seemed well today as far as her spirits go. They are keeping watch for any increase in temperature. Tomorrow they will repeat her blood work and Josie will see a cardiologist. With any luck, she will be on the mend and we may be able to go home.

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Day 14 Feb 6 – IWK
We just had an echo and her heart looks good. This will have to be rechecked in 4-6weeks. Her platelets are still 750,000. White blood cell count is back to normal. We are still waiting on her ESR #. I think they may send us home today 🙂

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Josie was able to leave the hospital. She had to take baby aspirin and iron supplements until we could be rechecked in April.

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April – IWK
Everything went well. No signs of damage to her heart. She will continue on iron supplements until further notice.

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UPDATE: Current day (APRIL 25, 2022)

We had a happy ending, thankfully. Josie is a happy, active 13-year-old, with only minor issues since KD; such as low iron and joint pain, mostly in her ankles and knees.

To this day, I still get stressed out just thinking of the experience we went through to get answers. I can only hope that sharing Josie’s story will help another family get answers sooner.

Josie now (age 13)

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