Are there any moms who had dealt w/kawasaki disease? My 7 mons. old son has been diagnosed with it 3wks. ago. He started out with a fever of 101.6 the first day and has no appetite, wants to be held all day long, and looked sad and not playful as his usual self. 2nd day- The fever kept going up throughout the day until it reaches to 103.7 even though we had been giving him infant tylenol every 4hrs as suggested by the advice nurses from Kaiser. We brought him to the ER when it reaches 103 temp. The ER doc diagnosed him w/ an mild ear infection and sent us home with an antibiotic amoxicillin. We tried giving it to him when we got home but he threw up on it. After that he went to sleep and woke up an hr later crying and started breathing funny--shallowed breath--best to describe. 3rd day- We went back to the ER again, another ER doc asked if he had a cold, that's why he is breathing funny because he sounded congested. He didn't have a runny nose or coughs. So they gave him a shot of antibiotic since he wouldn't take any meds orally. 4th day-still has fever above 101, noticed some rashes, went in to see his pedi. More rashes all over his body, trunk of the body, swollen, red skin on the palms of the hands and feet; red, dryed cracked lips. We thought he might be allergic to the antibiotic. They took blood test and urine test. Got a call in the evening fr his Doc, they said we have to admit him immediately to get treated for Kawasaki Disease. He had two treatments of IVIG within the first week and a half. He has all the symptoms of the KD and because of his age, he needed a second tx of the IVIG. After the tx, his symptoms were gone almost immediately externally ( rashes, fever, red and swollen palms of hands.) He has gone through the second phase and currently still on high dose aspirin 162 mg per dose/ 4X day until further notice. His blood test from last week shown that he still has the KD in his systems but the symptoms are controlled. Inflammation is still present in his system, further echocardiogram is later this week and also another blood test for the platelet and inflammation counts. They will continue to take his blood test every two weeks to monitors platelet and ESR counts, we want to see it gradually going down towards the healing process. Currently the skins at the tips of his fingers and toes are peeling which we were informed by his doc that it is an healing process. So far, no fever and he has gotten his great appetite back but we are still monitoring him very closely. He is not really out of the woods yet. Should he be under the care of an pediatric cardiologist? Any information on similar situations or stories will be helpful.
Hello C.,
You child is probably being evaluated by a pediatric cardiologist as he or she is possibly the one reading the echocardiograms. Ask your child's physician. It can take up to three months for all if the blood test levels to return to normal, and the asprin is cotinued until all levels have normalized. Talk to your physician! Ask questions! A.
I'm going through the exact same thing right now with my 4 month old daughter....every day it was something new with the symptoms.
C.
Hi C.,
I am sorry to hear what you are going through. It must be devastating to you.
Anytime there is a challenge in your health there is an imbalance somewhere.
Are you doing anything to rebuild his immune system? Are you interested in rebuilding his immune system?
I am a wellness consultant. The first thing I educate is to make the body strong so it may take care of itself. If you are interested let me know and I will help you get a program together with one of the nurses in our company that educates Eastern medicine.
Good luck.
N. Marie
Wow, that's interesting to see/hear of Kawasaki twice in just a few days now when it was an "unknown" when my son had it. He was 18 months old when he woke up with a huge red swollen rash on his neck and chest on a Friday. Got in to see the dr that afternoon, they gave him antibiotics or something and had us see the dr who would be on call the next day and we returned as it did not subside. My son could not turn his head as his neck was so sore and swollen. Anyway we were checked into the hospital that day and spent 5 days 4 nights there in December of '03.
They never knew what exactly it was, I only know it was Kawasaki (not confirmed though) because a month later I mentioned something that was really odd to my family (his palms and soles peeled as if he'd had a bad sunburn, I think this was about 2 weeks after he'd been sick). My cousin, who was visiting my family and is an Army pediatric cardiologist, immediately recognized the symptoms I described and the rash in the photo and told us it was Kawasaki's and to check his heart. So we did, fortunately all was well. He is now going on 7 and doing just fine.
All the symptoms fit from what I saw when I researched Kawasaki's online except for the "strawberry tongue" which I dont know about. Everything else yep. Age (peak age is 18 months) gender (more boys than girls get it) rash soreness/stiffness all the rest, I dont remember them all now.
Anyway, due to the hospital/doctor not identifying it as Kawasaki at the time, I dont know about the treatment protocol. I would feel better if you had a pediatric cardiologist involved tho. Maybe your regular doctor/hospital is aware and doing the right thing but 5 1/2 years ago they did not recognize it in my son. (We were in Turlock then. Good doctors, they just didnt know about this.) Also your son is only 7 months old - not saying it couldn't be Kawasaki, but that is young. A pediatric cardiologist would be more positive in confirming or ruling out whether it is Kawasaki's disease, and ensure you have the proper followup needed. (Hopefully you wont need prolonged care - only about 25% do if I remember right. But if you are in this group, you are fortunate to know of it now and get it treated. It is outgrown by age 6 I think.)
Hi there C.. My name is L. and my daughter Mia, was diagnosed with Kawasaki at 4 months old (she is now almost 3 years old). But we went through the same thing with Kaiser at first with misdiagnosing, the doctor said she had hand, foot mouth disease because she had a rash on her hands and feet and a high temperature (102)and was very irritable. So he sent us home said the rash and irritability should go away after 2-3 days, just keep giving tylenol. Well long story short her rash went away but not her irritability - it got worse and her lips became soo chapped they would bleed everytime she cried...which was constantly! so went back a couple more times and the second doctor mentioned kawasaki but said he wasnt sure,it would be up to us to treat it or it could be the flu we could just wait it out?? but then the third time we saw a Dr by the name of Kelly Kute - and she was a god send! She said Mia needed to be admitted to the hospital asap, start the IV treatment and sent us to the pediatric cardiologist for echo's. Mia had about 3 of the normal 5 symptoms of Kawasaki - high temp, irritability, rashes/really chapped lips so most of the doctors werent sure if it was kawasaki but Dr Kute said if it is we should not wait any longer to treat - since it affects the arteries and heart, and if it wasnt kawasaki the treatment wouldnt hurt her. But she responded to the treatment instantly - like overnight. She only had one of treatments and it went away - well all the symptoms of Kawaski (the first phase). However, she stayed under the care of the pediatric cardiologist for a few months -doing a few more echocardiograms and the aspirin regimen for about 6-7 months, until the platelet count was back to normal and no inflammation was present. But it took a good 6/7 months for everything to be done and over. And at that point we switched her normal doctor to Dr Kelly Kute and we love her! The hardest part back with the second part was having Mia do the blood tests every two weeks (we felt soo bad with all the poking) and you hear about not giving aspirin to babies, so I worried about that too for a while, but hey the benefits out weigh the risks! But now she is a growing, thriving 3 year old! with no problems. But hang in there, glad that it was finally diagnosed and can now be treated properly. As I mentioned Mia was under the care of the pediatric cardiologist until about 6/7 months when every thing came back normal (platelets and echo). I've been there so know it will seem like a never ending process but just know that with the aspirin, constant blood testing and echo's your son is on the way to recovering from Kawasaki. Also, the peeling of the skin is a sign that his body is starting to heal. Good luck and know that he can heal completely from this and become his old normal, adorable, fun self! :)
Did you see the post by Michelle C yesterday? It looks like she just went through the same thing. Maybe you can support each other.
Good luck!
C.
