The Kawasaki Disease Forum

My son's name is Dax. He is 6 months old. It's hard to tell for sure what day on the 10 day window his treatment fell on because he had gotten his shots 9 days before and got a fever that night. We'd been treating him with Tylenol and Ibuprofen, and exactly one week followig his shots, he fever spiked to 105 rectally and I couldn't bring it down. My 4 yr old daughter was in bed, so I couldn't put him in the car and rush to the ER, plus his temp was so high I was scared he'd have a seizure so I called 911. We went by ambulance to the ER. Dax is such a happy little guy, that even with that fever he was still interacting with people and responding appropriately. The EMT ticked me OFF! Took his temp under the arm, but didn't get an accurate reading, and said it was 99.1. My baby was radiating heat! There was NO WAY it had dropped that far that fast! But he wrote that down as his temp, told me it was in NO WAY an emergency and that we'd just treat this as a taxi ride to the ER. At the ER his temp was 102.8 in the ear and they gave him Tylenol, and eventually catheterized him and said he had a UTI. They put him on Keflex and sent us home. I asked why his lips and eyes and belly button were bright red, and they said "Oh he probably just has an upper respiratory virus, too".
So, we went home and he just got worse. His fever continued to spike to 104-105 and we were up around the clock giving him tepid baths and making sure he got every possible dose of meds. He was in misery. By Friday he had stopped taking his bottle. He had a rash around his neck (I pointed a slight one out at the ER and was told it was likey viral) and down his back, and in his groin area. He had a horrible cough and was working really hard to breathe. His eyes were matting shut. I had my mom take my daughter to preschool, and my uncle took Dax and I to Urgent Care. The Dr. there mentioned Kawasaki but didn't tell me what it was, so I began to panic. They did a chest xray, which was clear. They tried 3 times to get blood but he was just too dehydrated. The Pediatrician on call happened to be the local infectious disease specialist, and she told the Urgent Care Dr to admit him ASAP. We rushed him upstairs where we met the Pediatrician. She thouht maybe meningitis, but she said Dax made eye contact with her, and that kids with Meningitis don't do that. She said he had enough symptoms of Kawasaki that it was urgent that we begin treatment immedately. They tried again to take blood and start an IV. Eventually the IV was placed in his scalp and they got blood from his arm. His bloodwork came back pointing to KD. This all happened Friday, 9 days after the first fever. The echo shows enlargement of the coronary arteries but currently he has no aneurysms. He has a follow-up echo at 2 weeks and 6 weeks. The Dr said if I had waited even 12 more hours to seek treatment, we'd most likely be dealing with aneurysms. He didn't improve much following his IvIg treatment. At least not like I was told he would. He still couldn't eat, and looked about like he had when we went to the ER originally, but with cracked and bleeding lips and eyelids. They gave him a 2nd IvIg treatment on Tuesday and he was a different baby by morning! He still has a long road ahead but we were discharged Wednesday. He's on aspirin and tylenol, and is still obviously in pain, but we're making progress! His first follow-up is on Monday, Oct 6th.
Im going to report his KD to the VAERS because it was exactly 7 days following his shots that his temp spiked so high.
That's our story, as of today, Oct 3rd. Dax will be 7 months old tomorrow.
Shari
Dax, on Friday, Sept 26, during his admission to the hospital

Shari:

It's scary when children as young as ours get KD. They seem so small and helpless, but they are not as fragile as they may seem. In fact, I think kids come through with KD better than the parents do! I'm glad they recognized his condition before permanent damage occured. Just be sure to notify your doctor if the fever returns...other than that, I'd say your family dodged a bullet!

Hope Dax feels better soon and keep us posted on his followup echo!
Charlene

Hi, I have been talking to you on myspace! His eyes and lips were red! My sons did not get that red, but his rash was horrible. Poor little guy...........It breaks my heart to see the pictures. Blessings your way again!

Hello all,
Thanks so much for your kind words and support. Dax is doing pretty well. He still moans pretty much all night long,which is heartbreaking. During the day he's a fairly happy little guy as long as we don't let the Tylenol wear off. His fingers started peeling today, and it looks like his toes are about to, also. It looks like he's peeling gloves back off of his hands. HIs lips are cracked in 11 different places, and they break open and bleed at random. We keep Aloe Vesta on them, but it's not helping. His cough is still horrible. The good thing though, is that his fever has not spiked back up. It got to 100 earlier but Tylenol took it down and our "call the Dr temp" is 100.6 so I was nervous.
Dax 7 months old today. 1 week since 1st IvIg treatment.

Shari:

Does Dax have asthma or allergies? Have they said why Dax has the constant coughing....also, groaning at night is not normal. The heart is not the only organ that can be affected by inflammation...my son had an enlarged liver and spleen (from KD) and groaned with every exhale because of the added pressure. If the Dr who treated Dax for KD does not believe his breathing issues is KD related, it's definitely worth a followup with his pediatrician.

How did the followup echo go?

Keep us posted!
Charl

Dax has been readmitted to the hospital. I typed his current update in the general forum, but I am using a hospital computer and cannot copy & paste it here. They have added Prilosec to his meds, to try to protect him from a GI Bleed. He has flared back up and this is his 3rd bag of steroids, After 2 IvIg treatments last week and being sent home in between. If not better, we will be traveling to Doernbecher Children's Hospital in Portland in the next day or so. I'm scared out of my mind. Echo still shows inflammation but no aneurysms at this time. Will have follow up echos every 2 weeks until they are normal. I will try to update as I can.

Hi,
Doernbeckers is a great Childrens hospital. Our daughter had a cardiologist there and had many tests, included a 4D echo and cardio MRIs. They are a teaching hospital also and they gather a lot of input from doctors and have great technology. We live in Southern Oregon. We were in and out of Rogue Valley hospital until Paiges relapses were too much for them to handle and we were flown to Portland. It was terribly expensive and I think we could have driven and done just as well. It gets crazy where you are in that position. Thankfully then the insurance paid, but the flight was something like $17.000--I'm not sure they would have paid now or not though.
Our daughter had 3 IVIGs, 2 doses of Remicade, 3 pulse steroids, Abciximab, Cytoxan, and other drugs. I remember the high dose aspirin and the worry about bleeds, they had her take something like Pepcid AC. She also had Lovenox injections for a month or more. Aspirin does have a high risk for hives.........I am hoping that Dax is doing better now, please keep us posted. I can't remember, but is there something in the steroids that they could be allergic to? I'm sure your doctors have it all monitored.
Charlene is right, they should be doing those echos a lot more often that every two weeks if he flaring all the time and the KD is lasting this long. You do have an infectious disease specialist and a pediatric cardiologist involved in his case don't you? Our daughter went from 5mm to 9mm in a week on one aneurysm. It was hard to believe. She had them echos every other day or so while she was in the hospitals. At the childrens hospital they had wires all over her, IVs and thing being shoved in her like crazy, and all sorts of tests. There was a rheumatologist, gastroenterologist, cardiologist, infectious disease doctor, plus others. It was something no child or parent should go through, I felt a lot better at the Childrens hospital. Please hang in there and stop long enough to make sure you are taking care of yourself. You are in a mind baffling time.....some of us have been there. Keep us updated please and hang on, this is a wild ride with KD and you are having the one we dread. It seems unfair when other kids get over KD with one or to doses of IVIG and we have the kids that just don't and it seems never ending when you are in it. Our daughter had gotten her vaccinations before the KD started also, and a flu shot when she was sick, but not yet diagnosed with KD She was way over the 10 days limit of diagnosis before we figured out what was wrong with her by searching the internet.
By now, you doctors should be asking the experts for help, Dr. Burns, Dr. Newberger, Dr. Rowley, Dr. Schulman (sp?), etc, the ones who work with KD as their specialty.
We are here if you need to vent or ask questions.
Sandy

Just wanted to take a moment to post a note to all the people who have been praying for Dax. Great news! The 3rd steroid dose seems to have worked! Dax's numbers are all falling down into normal range. His Dr says she s surprised at how quickly they've fallen. He is home now, but we go see the Dr every day (yes, weekends, too). He is scheduled for his next echo on Oct 23rd. His temp has remained around 98.6-99.7 for several days. As long as it doesn't go higher, I think he is on the road to recovery. The palms of his hands and his toes are peeling now, also. He is still not sleeping well and it seems like his joints hurt, but we are taking it one day at a time. He is on Pepcid and aspirin right now. We don't give tylenol or ibuprofen because we don't want to mask a fever.
He's sleeping now, so I'm going to grab a quick nap before he wakes up again.
Hugs to you all, and thanks again for all your advice and support.