If anyone is familiar with the "typical kawasaki disease"...pleasssse let me know. I have read about it on the internet, but i rather know from somebody that has gone through this or is going through this.
My 2yr old has been diagnosed with typical kawasaki and has been referred to a cardiologist for further testings.
Please any info/advice is greatly appreciated!
i became familiar with it from watching medical diagnosis... i think on the discovery channel. you should see if you could get the tape or transcript....oops i meant mystery diagnosis
My niece had Kawasaki disease when she was about 2 also. I never heard of it before and it was certainly very scary. I remember My sister in law being terrified. She was running very high fevers with a rash all over her. They sent her to a cardiologist for testing also but it is just a precaution and she is now a very healthy, normal, smart, full of life 9 year old. I know its scary but try not to panic, she has absolutely no adverse affects from the disease.
Well given that you posted this on Monday, I'm imagining that your child is already receiving treatment. Had I read this on Monday my advice would have been simply to get your child to CHOPS or Robert Woods Johnson immediately and make sure you track down a really good pediatric cardiologist. Time is most definitely of the essence.
My son had atypical Kawasaki Disease 6 months ago at age 3.5. He was treated at Robert Woods Johnson and now has follow ups with the CHOPS outpatient clinic in Princeton (an incredible resource for accessing some of the best physicians in the country without having to drive to Phili.)
I'm presume by now that your 2 year old has already received the IVIG treatment and I am keeping my fingers crossed for you that it went well without any adverse reactions. Most children do not have cardiac damage, thank god. Unfortunately my son did despite receiving treatment after 4 days of fever - some water around the heart and arterial swelling but no aneurysms. The damage reversed with the IVIG and aspirin and at his 6 week check up he was clear. Longer term obviously we can't be sure what the consequences are - he probably won't be the guy in his 30s with great cholesterol numbers, but long term studies haven't really been done given it was only 'discovered' as a disease in the 1970s. Obviously I'm not a physician, but from the extensive reading I have done, nearly all children will be fine and those who have cardiac involvement nearly always manage to reverse the damage with treatment or simply through the course of time. I know it is incredibly scary to go through, particularly when a diagnosis is so difficult to attain (5 out of 7 'experts' told us it wasn't Kawasaki Disease and were wrong).
A couple of things we didn't realize at the time - there are different phases of the illness and you don't really get an 'all clear' until the 6 weeks check up. A very, very stressful wait. There can be behavioural consequences for months afterwards - it took 3 or 4 months for my son to be back to normal (not frustrated or getting very angry). If your child experienced arthritis pain (which may be difficult to tell if you have a 2 year old who cannot communicate adequately) that can last for months afterwards too, which can certainly be uncomfortable for them.
The odds are strongly in your favor that your child will make a full recovery. I'll send you my email address on a private message in case you have any questions. I do hope everything goes well for you. I know it is insanely scary and stressful and I can't believe what we went through this year.
Take care
My Daughter had this at 14 months she was very young. It was a very scary process but the doctors at Stonybrook hospital were excellent with her. Her cardiologist was also very patient and wonderful I couldn't have asked for a better team to work on her especially when it was still new to the medical field.
My advice to you is to make sure you keep on top of the doctors and the treatments. It's important to follow up with the cardiologist. This virus can cause damage to the heart and sometimes does not show for years to come my cousin also had this at 2 and he is now going to be 20 and he had minor damage done he is doing well but he still goes for follow ups.
As long as you stay on top of the doctors and ask alot of questions I'm sure you will be fine. It's scary to hear about it and sometimes reading scares you more but as long as you keep up with the routine check-ups you will be ok.
My son had it when he was 17 months old. It started out as a full body rash then his lips started to swell really bad to the point that they split and bleed. He had a fever of 105 that could not be broken with any type of medication. It was terrible I was back and fourth to 3 different hospitals because they tried to tell me it was viral. Finally his dr put the clues together and called a specialist. He was in the hospital for 5 days but thanks to that specialist he is okay with no long term heart problems. If you have any questions please ask.
