Struggling to Get KD diagnosis please help!

General discussion regarding Kawasaki disease
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Ashleydg
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Joined: Tue Oct 17, 2017 10:23 am

Struggling to Get KD diagnosis please help!

Post by Ashleydg » Tue Oct 17, 2017 11:15 am

Hi Everyone,
So little family history: auto immune diseases run in my family.
My daughter is 19 months old and very vocal but net yet able to communicate well when something is hurting.
Tuesday 10/10: My daughter's daycare provider described her as super cranky at day care but I assumed it was teething and didn't notice a high temp or anything when I picked her up. She woke up fussy in the middle of the night and it took a little bit to get her back to sleep.
Wednesday 10/11: Daycare provider texts me saying she has a low grade temp of 100.4 and asked to go down for a nap early at 9:30. When she wakes up from her nap around 11 I get a text her temp has gone up to 101 and that when she woke up her eyes were starting to get a little red. I get things ready at work to come pick her up. Get home and take temp again, its up to 102.5, her eyes are pretty red, and I notice that on her arms and legs a rash is startint to break out. I give her some medicine to reduce her fever and lay her down for a nap. When she wakes up her eyes are really red still and her rash is still present but the medicine brought her temp down. Go to doctor and he says its viral and sends us home (just wanted to make sure it wasn't pink eye or something but her eyes never leaked anything or got crusty). Fever spikes back up to 102. 5 that night and her other symptoms are getting worse. We give her more medicine and put her to bed. A cough has developed and she's not eating or drinking very much. She wakes up in the middle of the night and her fever has spiked again and she is really fussy and hard to console. Nothing is making her happy so we give her more medicine and I wait for her to calm down and put her back to sleep.
Thursday 11/12: My husband stays home with her and says that she has started to have diarrhea and her fever doesn't come back because he keeps her on meds. Says he thinks she might be better but when I get home she looks awful her eyes are worse, or rash has spread to her entire body, her lips are really red and starting to crack and her temp is back up to 102.7. I take her to an urgent care and they diagnose us with Scarlett fever and strep (strep test came back negative) and send us home with antibiotics. Said her throat was extremely inflamed. Give her antibiotics and some more fever reducing medicine and put her to bed. She wakes up at 1 in the morning screaming in what appears to be pain and nothing I can do helps. She screams inconsolably for almost an hour and we get ready to go to the ER because I have never seen her like this before. Finally she calms down once we have already gotten in the car and we decide to wait and see if the antibiotics help another day.
Friday 11/13: She wakes up at 4 with a high fever of 102.5 and I give her some more fever reducing medicine. When she wakes up the next morning she is still really cranky, won't eat much of anything and I give her some more antibiotics. Wait to see if her fever comes back. Rash, eyes, lips, all getting worse not better and her fever comes back at 1:30 at 102.9. Has diarrhea all day. Decide to go ahead and go to ER after talking with my sister who is a nurse. At this point her palms are really red, and all other symptoms still present. No swollen lymph node though. Get there and they start discussing some possibilities with us and run blood tests and urine tests. Her WBC count is up, her sed rate is really high and she has a really high CRP, too. She also has high levels of transaminase (sign of liver damage). Shows signs of anemia (low hemoglobin levels) and they mention her hands and feet look swollen. Give her a diagnosis of atypical KD and admit her and say they will start treatment in the morning once her labs for viruses come back. Have her on IV drip all night. Give her fever reducing meds at 10:30 when we are admitted and her fever is back up to 102.5. She wakes up inconsolable again and we ask for more pain meds. All viruses tested for come back negative. In the morning her temp is at 99.8 but has not gone back up and some of her rash looks better. Doctor tells us she will wait to start treatment to see if her fever spikes back up. Her temp goes up to 100.2 but stays right around 100 all day. They give her fluids all day and run another blood test and her levels still come back high. But she seems a little better. Temp still not normal (her normal temp runs around 97.8 ). Some of her symptoms start to get worse but not as bad as before.
Sunday 11/14: Still same temp never spikes up to 103 or 102 again and rash and eyes are better so they release us. They never did an ECHO or any test on her heart or ultrasounds of her organs in spite of diagnosing her with trasnaminitis. Do a blood test that morning and her levels are still high. She is still irritable but symptoms do look better and I am able to get her to eat some more. Ever since we were in the hospital she didn't have a bowel movement and seemed constipated.Get home and symptoms still present but not bad she is very cranky.
Monday 11/15: Extremely irritable. Go to follow up with pediatrician and he says he isn't 100% it couldn't still be Kawasaki, too. Plans to call ER docs to get more info on what she looked like when she was admitted and reach out to cardiologist. Temp at docs is 97.8 so back to normal and her other symptoms are gone. Starts having diarrhea again that evening and temp goes back up to 99.8 and eyes are more red again, notice a little of the rash is back but not super noticeable.
Tuesday: Temp is at 98.7 (not normal but not as high) and her eyes are still a little red. She is still irritable and slept a lot last night. Also had diarrhea again this morning.
Am I being crazy or should I still get an ECHO done to make sure and follow up with a cardiologist. I know our window for treatment is closing if it is ayptical KD and I just want to be sure. Not confident because the only virus they said had symptoms like hers she tests negative for.

Heidi1967
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Joined: Tue Nov 28, 2017 11:10 pm

Re: Struggling to Get KD diagnosis please help!

Post by Heidi1967 » Tue Nov 28, 2017 11:33 pm

I am new to the forum with a child that previously was diagnosed with KD and now has an unknown autoimmune disorder 5 years later. I have an interesting story and circumstances and was seeing if I could be of any help.

mcoss7
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Re: Struggling to Get KD diagnosis please help!

Post by mcoss7 » Wed Dec 13, 2017 10:33 am

DEMAND an ECHO, no if's and's but's about it, she had all the classical signs of Kawasaki and with that being said they should be better safe than sorry and do one. Kawasaki (in a mild form) can go away on it's own but that doesn't mean it can't do any damage. Shame on them for discharging you without an ECHO, if you were to look up and print out the Scientific Statement from AHA on Kawasaki Disease it states in there that protocol is to have an echo done. Good luck and I hope this helps.

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