i,m afraid...

Personal stories of individuals and families affected by Kawasaki disease
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alma
New Member
Posts: 1
Joined: Thu Jan 22, 2009 9:53 pm

i,m afraid...

Post by alma » Thu Jan 22, 2009 10:40 pm

hi my name is alma, i'm from puerto rico, i have 2 girls, the older one had kd in november 1995, she was 3 months old, it was a hard time no one at the hospital can tell me what was goin on, they think it was meningithis, after almost i week they told me it was kd, she was so bad. thank GOD,she did no have any heart problems, but i live with the fear that some day she wolud develop some kind of heart problem. the drs told that is not possible....but i,m, afraid. she is a beautiful girl, a soccer player...my life. i don.t know why i,m still crying while i wrote this, its a feeling that i can,t describ.e

Momcat
KD Forum Leader
Posts: 1515
Joined: Mon Jan 02, 2006 2:50 pm

Re: i,m afraid...

Post by Momcat » Fri Jan 23, 2009 12:40 am

Alma,
If your daughter had KD and they did the followup echo and she had no signs of coronary artery problems at that point, then she is probably just fine in playing sports and participating in any activities. Most KD kids are and the only ones that don't participate in contact sports are the ones with large aneurysms. There is late research that is showing some kids that had KD can develop some heart damage later, but these are newer studies being done and the research is not complete. There haven't been a lot of long term studies. Most kids, 75 to 95% do well after KD with no dilations or aneurysms, so probably your child is in those percentages. You cannot live your life in fear, it will consume you. Our child has aneurysms and has a very full and active life and she is at a high risk for heart attack or all sorts of heart problems. However, I refuse to let this reality from letting her live a full life and I refuse to let it dominate my thinking. I trust God that she is in His hands and I do the best I can at keeping her tested periodically and watching her medications. That is all we can do with what we have been given. Making sure you keep up on research and information regarding your child, is the best medicine. I have a feeling your child is doing just fine, especially if the doctors told you there was no damage apparent. Just do the best you can for the situation you have, that is all we parents have, some things are beyond our control. Live one day at a time and be thankful for each day. My child got giant aneurysms at 6 years old, she is 12 now and beautiful. I often think about what could happen, but have to watch that feeling so it won't turn into fear. I give that worry to God and know that He is in control.

Farah81
New Member
Posts: 7
Joined: Sun Feb 18, 2018 12:43 pm

Re: i,m afraid...

Post by Farah81 » Wed Feb 21, 2018 1:51 am

Hi momcat...my son was diagnosed with kd 2 weeks ago and 1 of his coronary artery dilated at 2.97mm.im just very worried if it will regress over time..have you come across anyone who has similar situation with my son..hes 15 months and cheerful and active..looking for some inspirations!!!!

Cici
10+ Posts
Posts: 15
Joined: Fri Jan 12, 2018 2:44 pm

Re: i,m afraid...

Post by Cici » Tue Mar 06, 2018 7:28 pm

Farah81 wrote:
Wed Feb 21, 2018 1:51 am
Hi momcat...my son was diagnosed with kd 2 weeks ago and 1 of his coronary artery dilated at 2.97mm.im just very worried if it will regress over time..have you come across anyone who has similar situation with my son..hes 15 months and cheerful and active..looking for some inspirations!!!!
Hello Farah81! I sent you two emails on Feb 24th via my KD account. I shared my son’s KD story and two months post KD updates through those two emails. My son was 15 months old when he got KD. Hope you received my emails and looking forward to connecting with you. All the best!!!

intrigue83
New Member
Posts: 3
Joined: Mon May 28, 2018 7:24 pm

Re: i,m afraid...

Post by intrigue83 » Mon May 28, 2018 8:06 pm

My son is 5 months old and yesterday echo shows 0.21mm on his left artery. Doc say max is 0.2mm. i am worried sick

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