Tess 8 months old-cyclosporine

General discussion regarding Kawasaki disease
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Berdugovet
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Posts: 8
Joined: Sat Feb 19, 2011 9:19 pm

Tess 8 months old-cyclosporine

Post by Berdugovet » Thu Mar 10, 2011 10:42 am

I'm finally posting Tessa's story. I've been reading all of yours and they've brought me both hope but anxiety as well.
Tess was 7 mo old when she was first got "sick". She'd had a "cold" on and off for weeks (she has a big brother in school). She was finally diagnosed with ruptured ear drums after a plane ride back from our Xmas vacation. She was treated uneventfully with ear drops and we though "that was that".
A week or so later, he developed a fever an started vomitting as well. We brought her to the ER in Key West where she was hospitalized overnight. While there, she had feverS, rash, and swollen cracked red lips. We were transferred to Miami Childrens Hospital just in time as she had decompensated significantly. She was severely dehydrated and was on oxygen as well.
When she was admitted, she was immediately checked for Spinal meningitis. She had a coagulopathy as well. There was a dr. There who immediately recognized her symptoms as Kawasaki - atypical at that time as she only had a few of the symptoms. She was started on iv Ig the following night ( day 5 of fever). She received a second dose 24 hours later. Her treatment with hi dose aspirin came a few days later as they were concerned she might develop a bleeding problem.When she responded incompletely to that, she also received 3 days of hi dose steroids. That was followed by 1 dose of Remicaid. At this time, she'd had 3 echoes. The first 2 were normal- he third may have shown one coronary artery to be only a mm dilated.
We were discharged after almost 3 weeks (with 1 week being spent in the ICU). When her hi dose aspirin course was complete and we gave 1/2 tab instead (1 week at home), her fevers returned. At approximately day 30 of this disease, she was started on cyclosporine with low dose aspirin. The research behind the use of this drug to treat KD is not yet published. The work is being done by Dr. Burns out at UC San Diego if anyone is interested. Her Crp continues to come
down- it is now 3. No more fevers. We are at 6 weeks now since the start of KD. A few days ago her echo showed dilation of about 4mm on the left and 2mm on the right coronary artery.
Ofcourse, I am sad over this news. I was also prepared though, since I realiZed how resistant she was to treatment. Now we are just praying her arteries to not dilate any larger and regress over time. Ofcourse, I also pray that she does not have any long term myocardial muscle damage either.
I wanted to share Tessa's story because not only did I see very few posts on the use of Remicaid, but I saw none on the
use of cyclosporine. I hope this information can help another resistant KD patient in his world!

angelsamongus
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Joined: Mon Mar 21, 2011 8:35 am

Re: Tess 8 months old-cyclosporine

Post by angelsamongus » Tue Mar 22, 2011 10:49 am

you are all in my thoughts and prayers. it is such a scary thing to go through, im sorry and stay strong and positive. i am trying to do that as well

Grahoey
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Joined: Fri Dec 16, 2016 8:19 am

Re: Tess 8 months old-cyclosporine

Post by Grahoey » Fri Dec 16, 2016 8:59 am

Hi Berdugovet.

Your story seems pretty similar to our in relation to drug treatment. I was just wondering how your baby is doing now post treatment.

Many thanks
G

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