Incomplete KD

General discussion regarding Kawasaki disease
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trulyblessedx3
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Incomplete KD

Post by trulyblessedx3 » Fri Aug 26, 2016 4:49 pm

Hi,
My son is five years old and diagnosed with incomplete KD as of yesterday. The end of July, he went to his regular well check appt where everything was fine then after that evening he developed a fever of 103 and complained of stomach ache and wouldn't eat or drink. He had a fever of 103.9 for five days straight and towards the end of the five days, his eyes were completely bright red and he began to develop cold like symptoms. Doctors said it was viral and also thought he may have appendicitis and he was sent to the E.R. where they determined he had a lot of inflammation but didn't know where it was coming from. He was put on an IV for dehydration for two days and while he was there, I stumbled upon an article on KD, never having heard of it in my life but most of the symptoms my son had were that of KD, so I informed the nurses at the hospital and they brushed me off completely and sent my son home with "your child's diagnosis is unknown". I informed his pediatrician about my concerns of KD and she referred him to a pediatric cardiologist where after doing an echocardiogram, discovered that my son's artery was dilated and diagnosed him with incomplete KD. I believe in my heart that God led me to read that article and if I hadn't followed through and spoken up about KD, my son would of never been properly diagnosed and who knows what could of happened to him. He's now on aspirin regimen and goes back in a month for a follow up echo. Has anyone else been diagnosed with incomplete KD? I pray my son's heart is healed by the time we go back for his next echo!

Lyndahloo
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Re: Incomplete KD

Post by Lyndahloo » Mon Sep 12, 2016 10:24 pm

Hi, my son is 4 and was diagnosed with incomplete KD on 9/9/16. It was the worst night of my life. He started with a swollen lymph node on 9/2 that grew overnight. He was put on Augmentin the next day for lymph adenitis. He then developed a fever and very red eyes. I knew something was very wrong. He had a stomach ache a couple times and some vomiting. We saw the pediatrician again on 9/5 and got some lab work done. They suspected it was the lymph adenitis and perhaps adenovirus on top of that. He continued with fever that week and by 9/9 they had us get more lab work done and a urine specimen. Now his platelets were elevated as well so they had us go to the ER and get a stat echocardiogram. He had 2 dilated arteries on his heart. I was devastated. We got transferred to the childrens hospital at Stanford by ambulance. He was monitored and started on high dose aspirin then the IVIG the next morning on 9/10. We were there for 2 nights and now we are home. He gets a couple of days on the high dose aspirin before we switch to low dose aspirin. We follow up with the peds cardiologist next wed. and he will get a repeat echo & ekg.

My emotions have been all over the place. So glad it was caught in time and that he seems to be doing okay, but then so sad that less than 2 weeks ago he was a normal healthy kid. I get so nervous about what the future holds and how his heart will do or worry that the KD will come back.

Thanks for sharing your story...

MissDonna
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Re: Incomplete KD

Post by MissDonna » Sun Oct 09, 2016 5:09 pm

Same thing happened with my one year old daughter, although she had all the symptoms of Kawasaki, I called for an ambulance she was so bad on the 3rd day in, fever & other symptoms, they sent us home saying they don't know what it is, probably a viral infection they said and gave us antibiotics 'just in case'. A day later I went back to a&e she was so much worse red eyes, rash, wouldn't eat, every symptom of KD. But before I went in the second time I googled her symptoms, came across a few & thought nope doesn't match up, then saw Kawasaki disease, ticked all the boxes and I knew that's what she had. So when doctors looked at me clueless and suggested we went home again, I mentioned Kawasaki disease, the doctor came back & said yes she does & how did I know. How angry I was to have to diagnose my own daughter, but I know they don't know very much about this disease. I'm happy I googled the symptoms or she wouldn't of got treated whatsoever. It's only 5 weeks on & her coronary arteries are still enlarged sadly (as they prescribed her the wrong dosage of aspirin til a few days ago) :o just hoping she'll get the all clear of KD when she has her next echo

Nancy
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Joined: Mon Apr 25, 2005 6:49 am

Re: Incomplete KD

Post by Nancy » Sun Oct 09, 2016 6:47 pm

hi

sorry to hear your daughter was prescribed the wrong dose of aspirin, but please know that aspirin does not have any
effect on enlarged coronary arteries.
Aspirin is used in Kawasaki Disease as a mild blood thinner, to help prevent blood clots.

best to you both,
nancy

MissDonna
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Re: Incomplete KD

Post by MissDonna » Mon Oct 10, 2016 5:11 am

Oh, gosh, I didn't even know that, doctors have barely told me anything, can't get an answer to anything I ask about Kawasaki disease. Should I be worried then, as her arteries haven't gone back to normal size and she's getting some symptoms every now & then back? Even though it's been 5 weeks since she was treated...

Nancy
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Joined: Mon Apr 25, 2005 6:49 am

Re: Incomplete KD

Post by Nancy » Mon Oct 10, 2016 6:48 pm

hi

One really has to do one's own "homework" with Kawasaki Disease !

Any questions you have regarding symptoms should be brought to the attention of her pediatric cardiologist, not her
pediatrician or family doctor ! I used to email my son's pediatric cardiologist about twice a week for the first
month after he had KD !

best,
nancy

verobaru
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Re: Incomplete KD

Post by verobaru » Wed Nov 30, 2016 4:23 pm

My daughter was diagnosed when she was 8m (2013), her only symptom was a high fever and "crazy" blood test results. They tried with antibiotics, and my doctor studied KD from Dr. Kawasaki himself, so he caught it! She was dyagnosed with "sindrome de kawasaki atipico" (we were in Ecuador, South America), and she got some fluid on her heart but went away quickly!!

Carrie23
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Re: Incomplete KD

Post by Carrie23 » Fri Feb 24, 2017 10:05 pm

Was her ESR level high and could you tell me how long it took to return to normal? Thanks.

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