Personal stories of individuals and families affected by Kawasaki disease
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My daughters journey has been well there are no words to describe the anguish of what she went through with this disease. Lydia just turned five years old this Feb. A month later she almost died. It started on a sunday she told her grandmother thatt she felt dizzy. Well we as parents don't always listen to what our children are saying. Well that Monday she got up for school says "mommy I don't feel good" I take her temp and its at 103. Well after dosing her with Tylenol and Motrin by 3 that afternoon it had not went down at all. So off to the hospital we go only to be told that after a 6 hr visit that she was ok. No more than an hr after getting home she has a complex seizure due to her temp rising TO 105 . Back to er that same night only to be sent home again 30 min later. Why not she was walking laughing etc. Well the temp shot back up to 106 that following day she couldn't walk she couldn't eat she didn't even know who me or my was because she was delirious from her temp being so high. so rush back to er from where they admit her to pediatric icu and she spends a long terrifying 7 days. Looking back we didn't know what she had until a team of 12 infectious disease drs concluded this. It was possible meningitis tick fever in the running before the kawasaki was. She was officially treated for this with 2 rounds of IVIG and continual ultrasounds of her heart. She had only the classic red eyes and rash with a small amount of fluid around her heart. So this is where im baffled. I take her to her last echo visit not even a month ago the cardiologist says he wasn't even sure if that's what she had due to her heart now being beautifully perfect and her skin never peeling or the strawberry tongue. So if someone has been diagnosed with a typical please let me know. Im terrified that it wasn't even kawasakis disease and that they treated her for something 6that could likely come back. As all of you know kawasaki disease is life altering and terrifying to experience. Please someone respond and give me some input. My name is Brittany and watching my little girl lie there barely clinging to life is something I cannot put into words and the thought of something coming back scares the shit out of me. Lydia was in hospital for 14 days total. 12 of those days she had a fever of at least 102 and that's after the IVIG. I was told that she wasn't going to make it if she didn't respond to treatment. All I could do was beg God for mercy. I still cry because she was on full oxygen her blood pressure was tachycardia. She had pneumonia and cdiff on top of kawasaki disease. She had a feeding tube in place ad well as a catheter and an I'V. They said she was their miracle child if the month. So why say its kawasaki then turn around after all that's been done and say its not. I'm confused and lost with all of this. Im so thankful her heart is ok right now. However she still complains of joint pain in her right leg and they don't say anything about that. If anyone has some advice it would be much-needed
I wish there was more information for you. I wish I could help you. I just went through a very scary time with my 3 yr old son. 3 different hospitals before we got the help we needed. I understand your frustration. I hope your little one is doing better and you have found some answers. Update if you can. My thoughts are with you guys.
She is doing better for the most part. Though at night she wakes up crying from joint pain in her legs and her pediatrician did confirm that it was from the kawasakis. Sge will be getting a referral to see a rheumatologist. They did not say whether the joint pain would be permanent so i guess time will tell. She is finally off the high dose aspirin. Also I got confirmation that it was kawasakis all along. Her dr from infectious disease called and told me that it was and not to listen to what the cardiologist said because he was dr the entire time she was in the hospital. I just pray that there are no long term affects from this disease. My whole family as been traumatized by this experience. Its just mind boggling that she got sick and within 24 hrs of getting sick she was about dead. I am so thankful for the staff and drs that she had. She was in one of the best hospital s in the US. And I do believe that is what saved her life and as well from plbecoming something worse than what it already was. I will continue to post updates