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Belair
Mar. 17, 2012, 11:02 AM
My 4 year old daughter was diagnosed last month and spent 9 days in the hospital, 8 of which were in the ICU. Unfortunately, she has had significant heart involvement. :cry: Anyone here have any experience with this?

MistyBlue
Mar. 17, 2012, 11:06 AM
No, no experience with it personally Belair. But my goodness...your poor baby girl!

How is she now? Are they monitoring to see if any of the cardiac changes improve over time?

Belair
Mar. 17, 2012, 11:16 AM
Thanks, MistyBlue. She's feeling better. She'll be having regular echos to monitor her heart. Her cardiologist says that some kids' aneurysms resolve, but it's a wait-and-see.

Kat_Renee
Mar. 17, 2012, 01:02 PM
I had it when I was a kid in the 80s. I think I was two. I had multiple aneurysms and at the time they had the disease in certain levels and I was at either the highest or second highest.

I had regular echos until I was 7. During my last echo when I was a kid, the doctor couldn't find anything so he said his machine must be on the fritz and that he would call us back when he got a new one. He never called us back.

I was on an aspirin regimen for about 5 or 6 years. Blah. It was always orange flavored. Yuck!

I had another echo when I was 14 and everything was still clear, no scarring or anything. I want to say I got another one before college, but I can't quite remember. I have been meaning to schedule another one, since it has a while (I'm almost 29). In my teens, they did say that I was more prone to heart disease and that I shouldn't get overweight (oops), smoke, do drugs, drink too much.

My uncle also had it (related by marriage, not blood) and is fine in his 40s (maybe 50s by now!). He stays in shape and is very healthy. It is certainly not a death sentence! It does take time for the body to heal itself, but I can honestly say that I never felt like I had a heart problem.

I hope everything works out with your little girl!

Reynard Ridge
Mar. 17, 2012, 01:05 PM
PM FlashGordon if she doesn't pop in on this thread. I believe she might have some insights for you. :yes:

Belair
Mar. 17, 2012, 01:17 PM
Kat_Renee, it sounds like your case is just like DD's. I so hope it resolves like yours! I want her to be able to do sports (and ride!) and live her life normally,without restrictions. Your story is encouraging.

Thanks Reynard Ridge, I'll do that.

AKB
Mar. 17, 2012, 03:01 PM
Make sure your daughter goes back for the echocardiograms at the recommended intervals. A friend of mine recently saw a kid with chest pain. The family didnt mention that he had cardiac involvement with Kawasaki disease 10 years earlier, but didn't go back for follow up visits. She fortunately did an EKG on him, and found changes. He had an emergency coronary artery bypass surgery that night. In all of the kids I have met with Kawasaki, I had never seen or heard of a late complication before. Most kids with Kawasaki are fine. However, the follow up is important. Those rare, late, complications do happen sometimes.

kookicat
Mar. 17, 2012, 06:12 PM
No advice. Just wanted to send jingles.

zakkandtoto
Mar. 17, 2012, 06:59 PM
My SO's son had it when he was 4 years old. Unfortunately, he was hospitalized for days while they tried to make a diagnosis. They were prepping him for a tracheotomy when the little guy's grandmom, who'd read about Kawasaki's, prompted the doctors to test and treat him for it. They did and it worked.

He's 9 now. Still goes in to be tested yearly, but he's doing extremely well. He plays soccer, football and baseball.

FlashGordon
Mar. 17, 2012, 10:11 PM
Hello there, Belair. I am so incredibly sorry to hear about your daughter. How is she doing right now? Whereabouts are you guys located?

My daughter had Kawasaki's in November of 2010. She was also four at the time. She had what the doctor thought was a very bad flu, until she developed extreme vasculitis. Thankfully one of the peds in the practice recognized the symptoms and admitted her. I have never seen anyone so sick in my life, the blistering was the worst part. She had two rounds of IVIG and high dose aspirin therapy. She spent over a week in the Children's Hopsital here in town.

We are in Western NY and have a good Children's Hospital here, but we did consult with specialists at Boston Children's Hospital, they were immensely helpful. I can find their names if you are interested.

Our little girl did not have cardiac involvement, but she was followed by a cardiologist for a year post-illness. While we were told she would "bounce back" from the Kawasaki's within 8-10 weeks, it took her months to really get back to her normal self. Her hands and feet would often swell and get red, she was exhausted, and ended up with Mono (yes, in a 4 year old) strep, and staph in the months following Kawasaki's.

It was a very trying time for us, and it is not a common disease, so it's hard to find support. Please feel free to PM me if you'd like to vent or chat more.

My heart goes out to you! If there as anything I can do for you, please let me know. Your little girl and your family are in my prayers!

ETA: My step sister had it when she was 2. She is now 14, plays a TON of sports, and is a normal, healthy kid. So, there is a good chance your daughter will be just fine too! ;) Hang in there my friend.

Belair
Mar. 17, 2012, 10:37 PM
Thank you so much for your post. I'll send you a pm.

didgery
Mar. 17, 2012, 11:14 PM
My 4 year old daughter was diagnosed last month and spent 9 days in the hospital, 8 of which were in the ICU. Unfortunately, she has had significant heart involvement. :cry: Anyone here have any experience with this?
My nephew was diagnosed with Kawasaki disease many years ago and is now very active and healthy. I would have to ask my sister for more details, as it was so long ago. Jingles for your daughter!