KD Foundation Press Release: What is Kawasaki Disease?

General discussion regarding Kawasaki disease
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Joe
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KD Foundation Press Release: What is Kawasaki Disease?

Post by Joe » Tue Jan 06, 2009 2:50 pm

Kawasaki Disease Foundation Press Release: What is Kawasaki Disease? Click here to download.

janey_1129
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by janey_1129 » Tue Sep 07, 2010 9:38 pm

hi there joe, my grandson is post ivig for 2 weeks now and lately i've observed that most of the time he is very sleepy and easily gets tired, he still has rashes around the neck area, some on his tummy and underneath his eyelids, is that normal for post ivig, he's platelets lowered from the highest of 600 it's now down to 457, he'll have his 2decho on oct. 5 , should i be worried about the rashes, the one's on his cheeks has faded, but i'm bothered about the one's that are coming out again....thanks and Godbless!!!

rwilliams1530
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by rwilliams1530 » Thu Jul 07, 2011 7:47 pm

I really agree that the their should be a major push on this disease as it continues to affect a lot of children. Some segments on the news and so forth to raise awareness...

momto4
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by momto4 » Sun Aug 21, 2011 3:48 am

Janey_1129. My daughter was just diagnosed with KD. She has seen 5 different doctors. They went back and forth with KD and Eryothema Multiforme. We just saw a Cardiologist and her heart looks good, however they will follow up again. She had all the symptoms except swollen lymph nodes. My daughter did not receive the treatment as her fever went away. The rash disappeared and then her fingers and toes started peeling. Now her rash is coming back. The doctor told us that the rash does not return when the fever is gone. She is also now hurting in her joints. At times she says she can't walk because it hurts too bad. Did your grandson's fever return? I have been so stressed because I am told something different with every doctor we see.

wsoliman
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by wsoliman » Thu Sep 08, 2011 4:18 pm

my daughter has been got kd at UAE on 23-08/2011 she recived immoglobin iv and asprin however her echo doppler was normal and she has review after 6 weeks for second echo on 05-10-2011 ,,my question is :
01- if second echo also is normal she still need mor investegation in the future ?
02-what about her immunity ? she will be less than befor?.. and when she can go to school ? i mean if she went to school now she will get any infection from othr childs?

thank you,

maria dinna
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by maria dinna » Fri Nov 04, 2011 1:56 am

rwilliams1530 wrote:I really agree that the their should be a major push on this disease as it continues to affect a lot of children. Some segments on the news and so forth to raise awareness...
My daughter reese was diagnosed with Atypical KD last sept 22 just right before her 2nd bday.. was found to have pericardial effusion and was given IVIG and taking 300mg aspirin 4x a day.. her next 2D echo sched will be this Nov. 10 2011...
When she was 10 day old, she was found to have sepsis and was given antibiotic for 14 days. Just last May she had viral meningitis and was confined again. Before the KD she had pneumonia...
I've read articles with possible complications other than the heart and its getting depressing and frustrating everyday how can i prevent and protect my daughter. She was breastfed almost a year..
I think like most parents its the emotional, financial and psychological side that affect us most seeing your child suffering from any disease... God help us all..

jeremiah's_mom
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by jeremiah's_mom » Tue Apr 03, 2012 2:27 pm

my 3yr old son was diagnosed almost a year ago and i wanted to know if there are any restrictions on international travel

dtl1954
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by dtl1954 » Thu Mar 28, 2013 10:21 pm

My daughter had kwasaki at age 16. I remember the day like it was yesterday. We were out having breakfast and her hands were swollen and painful and she had a slight rash. I told her maybe she was eating too much salt and it was causing swelling. I wasn't sure what to say about the rash that was on her wrist, it was itchy and I thought maybe she had a slight allergy to something. I called the pediatrician and he said to give her Benodryl for the rash. The next day the symptoms continued, I called the pediatrician again and he agreed to see her. He examined her and said it was just a rash and to continue with the benodryl. Day 3 she now has a fever, rash and she is home from school sick. Day 4 she is running a high fever, swollen glands, swollen hands, she is sick. We visit the pediatrician again, blood work is done, it all comes back good, diagnosis urinary tract infection...treatment sulfar. Day 5 she is getting sicker, her fever is high, her tongue is swollen, her eyes are bright red and swollen. I call the pediatrician again, we have another visit, it is a unknown virus. Day 6 fever, swollen hands, swollen tongue, rash, red eyes, hands are peeling. Back to the pediatrician. Day 7 she is not able to climb the stairs without being winded, she needs help walking, the back of her legs are aching something terrible. No one in the house is sleeping, someone is with her every minute. Day 7 much of the time, sleeping, tylenol. I am very worried, no one can tell me what is wrong with her. Day 8 I was going to the dermatologist for a visit, and I brought Kristen with me, and I thought maybe this doctor can tell me why my child's hand are peeling and her hands and palms and like raw meat. The dermatologist took a quick look at her hands and stated it was Kawasaski. I stop dead in my tracks and contact the pediatrician, he was not in and the covering pediatrician stated it could not be kawasaki because she was too old! Day 9 her pediatrician calls, it dawns on him she could have kawasaki. When he called he had already made an appointment with a cardiologist! Day 10 we go to the pediatrician, she has some left valve damage, and she goes on asprin therapy for 6 months. She is now 26 years old, She seems to always be sick with soar throats, swollen glands or just a general not well feeling.

It was the worst time of our lives, not being able to help her every single day! I could have lost her! Never listen to anyone, I continually spoke with the pediatrician, every single day for 10 days, no one would listen. She was just too old for that disease. She has visited a cardiologist regularly. I do not know what the future brings for her! There are not alot of studies about long term issues to kids who survived kawasaki. But the misdiagnosis could have caused my daughter's death!

The pediatrician still speaks to me about my daughter. He has apologized many times for not admitting her to the hospital! My advice to parents "you know your child, listen to your heart and your gut, just don;t wait!

My girlfriend lost her 2 year old grandson to the same disease in 1990, he was a healthy beautiful child one week, diagnosed with a fever and ear infection, one week later he passed away. Kawasaki shut his system down, caused kidney failure and he passed away just short of his third birthday!

daussiemoe
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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by daussiemoe » Sat Mar 30, 2013 12:47 am

I had the disease at 13 years old, in 1978 and I am female. I didnt think of the long term effects until tonight when I watched Grey's Anatomy. Now I wonder about longgggggggg term effects.
Diane

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Re: KD Foundation Press Release: What is Kawasaki Disease?

Post by JPNorth66 » Sun Jul 13, 2014 5:33 pm

wsoliman wrote:my daughter has been got kd at UAE on 23-08/2011 she recived immoglobin iv and asprin however her echo doppler was normal and she has review after 6 weeks for second echo on 05-10-2011 ,,my question is :
01- if second echo also is normal she still need mor investegation in the future ?
02-what about her immunity ? she will be less than befor?.. and when she can go to school ? i mean if she went to school now she will get any infection from othr childs?

thank you,
Hi Wsoliman! My daughter was diagnosed at just over two with KD and was treated with IVIG. After being released from the hospital, she immediately began vomiting again and the fever returned within hours so we turned around and headed back to CHaD, where she was readmitted and had a second round of IVIG. She was followed by a cardiologist for a year and continued to have clear echos. After the 12-month test, she was released from the Cardiologist - they felt there was no need to continue to monitor her.

As for her immunity - that is questionable. She never really seemed to get sick like her friends during Flue season - actually, I don't think she has really ever had the Flue. However four years after the KD diagnosis, she was diagnosed with a Strep A Blood infection which almost took her life (due to the medical community urging that she had the Swine Flu, only to learn I was right and they were wrong...). One year after that, she was diagnosed with a Strep Pneumonia blood infection...

She does have terrible teeth due to the incredible amount of antibiotics she has had over her life time. This may or may not be an issue for some of you who read this.

Obviously, fevers now freak me out!!

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