My daughter, Chloe, age 4

Personal stories of individuals and families affected by Kawasaki disease
Post Reply
10+ Posts
Posts: 16
Joined: Tue Jan 13, 2015 2:40 pm

My daughter, Chloe, age 4

Post by Notto17 »

Here's a summary of my daughter Chloe's diagnosis of KD.

She was initially seen for severe congestion after Christmas, and treated with amoxicillin for sinus infection. However, the next night she started complaining of her ear hurting and developed a fever after being on the amoxicillin for two days. We were switched to a stronger antibiotic. Her fever continued, her ear was still hurting and then after two days on the stronger antibiotic she threw up upon waking and it had brown flecks in her vomit so I took her to the ER as her pediatrican was booked up and I was concerned there was blood in her vomit. They gave her zofran and sent us home. That night her fever spiked to almost 104. We debated taking her to the ER again, but we were able to bring it down and she was resting so decided to just let her sleep off whatever she had going on. By Sunday she was so exhausted, she would wake for about 15 minutes before wanting to sleep again. She was so tired I would feed her laying down. Her rash started that day as well. It started behind her ears and around her face at first. It seems like a heat rash as was worse where her hair was sitting. But that night it stread and got much worse. It covered her entire body and her feet were itchy.

We were seen immediately Monday morning and her pediatrican ran a bunch of tests, negative for flu, strep and mono came back positive. So she thought it was just mono and her rash was a reaction to amoxicillin with mono. She wanted to see her back in two days because she hadn't ruled out KD yet. When we arrived Wednesday morning, her doctor then confirmed it was KD. She said it would 24 hour treatment in the hospital overnight; however, she needed to see if she could be seen for an echo, and when she came back said they couldn't get her in for two weeks, and the pharmacy said that since Chloe was no longer spiking fevers, she could come back the next day and would be given IVIG in the infusion center and she wouldn't have to be admitted.

However, my sister said the echo is necessary at diagnosis (she's a PA) so I drove to a nearby town, willing to take her to the ER to get an echo - but was told that the doctors would have to determine if she needed an echo, and basically if someone didn't order it, she wouldn't get it. I called the children's pediatric clinic where her echo was scheduled at (for 4 weeks later!) and they said it was okay to wait because if they do the echo too soon, they may miss something. So I was thinking it was standard practice to wait.

So we went back home and went to do the IVIG through infusion the next day. While they told us it would take up to 8 hours, it actually took 13 hours. We left the infusion room in the ER department at our hospital at 10 PM. My daughter spent all day in a reclining chair in a room where other patients were also receiving varoius treatments. They 'monitored' her by taking her blood pressure and temperature every hour or so. However, the infusion tech went home at 5 PM, so an ER nurse would check on us temporarily.

After talking to hospital administration and the pharmacist, they told me they will be more aware of lenghts of treatments in the future and most people prefer the infusion room. After doing more research and realizing that no one has heard of doing IVIG outpatient like that and from the great advice of Joe from forum and Dr. Burns, we learned she needed to get an echo ASAP. We found a children's hospital that is familiar with treating KD that saw her immediately. She received an EKG and echo a week and half after diagnosis that thankfully showed no issues. We go back March 2nd for her 6 week checkup.

The cardiologist there actually isn't sure if she did have KD because of her lab work. However, since she was on antibiotics, that could throw things off. We should find out more at her follow up appointment.

It's been very frustrating to learn of the lack of care our hospital provided. We are in the process of writing a letter to address all our concerns (We've called and been in contact with people, but after we found out more on KD, I do not feel they are taking our concerns seriously nor are they following standard of care addressed by American Heart Association). I hope to raise awareness for them in that if they are not going to treat appropriatately, they need to refer their patient's to a children's hospital -even if it is 6 hours away.

Post Reply