Kawasaki - Recovery

Updated on March 03, 2009
J.L. asks from Cos Cob, CT
7 answers

hi moms-
I know this disease is rare but I'm hoping someone out there can shed some light / hope! My son (13 months old) recently had kawasaki disease. Before his IVIG treatment started, my son's baseline ekg & echo-cardiogram were both normal. At his follow up with the cardiologist last week, his coronary artery was a little (2 1/2 - 3 mm) enlarged. We are going back for another follow up echo & ekg in 3 weeks. Doc said hopefully it will go back to normal. Of course I will be freaking out for the next few weeks! A friend of mine told me her fiancee's dad had kawasaki and has had 4 heart attacks. (He is now 65 so he had kawaskai a long time ago, hopefully they treat it better now!!??) Any moms out there who have dealt with Kawasaki & enlarged coronary arteries? I'd love to hear your stories & advice.

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E.M.

answers from New York on

http://en.wikipedia.org/wiki/Kawasaki_disease
Dear J. -- my prayers are with you and your son. I didn't know what that disease was, so I looked it up on Wikipedia. That is the link above. I thought you might like to read it, if you haven't already. There is a great deal of information at the site. It seems the prognosis is quite good since your doc found the disease early. If you don't think your pediatrician is doing enough for your child, just compare his tactics with those suggested in the article, then either reaffirm your trust in your doc or look for another pediatrician or specialist who will correctly treat your son's disease. I am led to believe that with early diagnosis and proper treatment, your son will have a very happy life! (It might be tough on you and his dad, but he will be fine. Kids are just like that!) In the meantime, you will be in my prayers.

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R.Y.

answers from New York on

I don't know this disorder but I know how stressful it is when you child has potentially serious medical problem. Both my children were were full term but in the NICU and my first was on a respirator for 2 weeks after he was born. He is totally fine now (age 3) and has been since before he was a year old. I wanted to write and offer support because even when friends and family are supportive they may not understand what you are going through. I wish for the best for your son and your family.

1 mom found this helpful
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R.H.

answers from New York on

Hi J.,
I have never heard of Kawasaki. It sounds like he's gone through alot his first year! My heart and prayers go out to you and your son.
R.

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A.G.

answers from New York on

My daughter was 3 when she had Kawasaki Disease. She is now 8 years old and doing great!!! She did not have any coronary enlargement but did the aspirin therapy to help ward it off. I have been in contact with lots of parents with KD and some have said their chil did have the enlargement but like any swelling just needed time to go back to normal. Here is a web site that you can find lots of information as well as chat with other parents that are going through or been through what you are now. KDFoundation.org is the web site. Hang in there. My daughter was diagnosed on day 5 hospitalized 1 night and given the IVIG and was home the next night to sleep in her own bed. We had to have a follow up ecko one month later but she was fine. The day after getting out of the hospital she was riding her bike and at the horse barn with Grandma. Just remember swelling of any type takes time to go down!!! Try to not panic and follow doctors orders. Please keep me posted on your little boys condition. I will be praying for a full recovery. A.

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H.L.

answers from New York on

Hi J.,
Just wanted to share some info re: a website similar to Mamasource that might be able to give you some further advice/personal experiences. It's through the Discovery Health Network, so it's more medically based and far reaching. You can sign up at : http://www.inspire.com/groups/pregnancy-and-parenting/
It's like Mamasource in that you can ask a question and have people (professionals & parents) respond.
Good luck and take care!
H.

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S.V.

answers from Rochester on

I had it as child (year and half old) and recovered prefectly fine. No heart problems at all. I had great care from my pedi Dr Vora at Strong Hospital. In the 80s they knew next to nothing about it, thank goodness my doctor had just read an article about it or things might not have turned out so well. I hope everything turns out good for your LO.

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M.H.

answers from New York on

Hi J.,

My husband's son had this when he was around 1 - 2 not sure. However, his doctor saved his life, she diagnose him very quickly. Her name is Dr. Thomas in East Orange. Due to personnel issues with my husband Ex-wife I do not take my kids to her. But she is a Great Doctor. Maybe for a second opionion, you should contact her. Good Luck!

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