Is this normal KD?

General discussion regarding Kawasaki disease
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Kiarra
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Joined: Fri Jun 09, 2017 3:07 am

Is this normal KD?

Post by Kiarra » Fri Jun 09, 2017 3:36 am

Hi everyone so my daughter was 6 months old when admitted to hospital following a high fever, rash and swollen lymph nodes this was 3 weeks ago we first heard the name Kawasaki disease on day 4 of her hospital admission when they considered doing an IVIG transfusion but they first wanted to do a few more tests. She had her first transfusion on day 5 of her hospital admission and showed minimal improvement we were transferred to a more specialised children's hospital the next day and are currently still here. We have done in total 2 IVIG transfusions, one course of high dose steroids for 3 days, aspirin daily and numerous antibiotics, anti viral plus a few other medications to treat symptoms eg fluid retention, anemia, low potassium. She was in ICU after her second IVIG transfer due to no improvement and constant fatigue to the point of concern medically, she had a LP which showed inflammation/infection signs, full body MIR was clean and no concerns mentioned expect excess fluid build up which they were already treating, 4 days in ICU they made the decision to try high dose steroids which she showed improvement on and we were sent back to the ward for the rest of the steroid treatment. Continuous signs of KD are still present despite treatment thus far expect for fever (thankfully) due to irrablitity we had a bone scan which showed 'hot spots' on one elbow, one ankle and both knees, blood tests show overactive bone marrow (platlet count is through the roof and still rising) CRP and ESP levels are rising again (4 days post steroids) which dropped during steroids and stayed down for the first 48 hours after steroids finished. Doctors believe it's KD and one of the few cases which don't respond to normal treatment has anyone else experienced anything like this? What other treatments are there? How long does it take to resolve? will the bone marrow resolve by itself? Are there other possible complications besides the heart complications?

Gramcat
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Joined: Sat Sep 23, 2017 9:09 am

Re: Is this normal KD?

Post by Gramcat » Sat Sep 23, 2017 9:33 am

My grandson was four months old and had been sick for over two weeks with several doctor visits. He was finally hospitalized and diagnosed with KD when they found five aneurysms in his coronary arteries. He also had transfusions, multiple IVIG, steroids, etc. He was in the hospital for ten days, five of which were ICU. They couldn't stop the aneurysms from growing and two were "giant." He was on steroid treatment for over two months after he came home and has been on blood thinners and aspirin since and probably will be for the rest of his life. We were told the giant aneurysms would never get smaller, but they have. They are still classified as giant, but not as big as they were.

He is now three years old and a very typical little boy. He learned to sit, crawl, and walk normally just like any baby. He bruises easily and is so active that he is usually covered with bruises, but just a little more than a normal preschooler. His energy level is high and no one who sees him would ever imagine that he has such severe damage to his heart. His parents are rigorous in his medical treatment and that may be part of the reason he is doing so well. We thank God every day for his continued health.

I hope your daughter is recovering and that this post will give you hope for her future.

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