Is this normal KD?

General discussion regarding Kawasaki disease
Post Reply
Kiarra
New Member
Posts: 1
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?

Post Reply