The Kawasaki Disease Forum

My 3.5 year old son developed red eyes the Wednesday before last. At first, I didn't think anything of it. I thought it might be allergies or pink eye. After a few days, when it didn't subside, I took him to his pediatrician. She said it didn't look like pink eye because there had been no discharge, but she gave me a prescription for an antibiotic to try if he did not get better. By the Saturday after his eyes turned red, they had gotten significantly worse and he felt hot. He also developed a rash on his knee and his lips and tongue got very red. At that point, I started thinking about Kawasaki's and got very concerned. I got a thermometer and started monitoring his temperature. He was generally normal, but had a few temperatures around 100. The highest it got was 100.5. I decided to go ahead and give the abx drops a try. We used them for two days with no improvement and then went back to the doctor last Monday. She said to stop using the drops and go see an ophthalmologist. On Tuesday the rash spread all over his body, his eyes were completely red, and his lips and tongue were worse. On Wednesday, I decided it was time to go to the ER. We went to Children's National in DC. The ER doctor immediately thought Kawasaki's. He ran a few blood and urine tests. Most of those tests were normal, with the exception of ESR and another inflammation indicator that I'm not sure of. Both of the inflammation indicators were only mildly elevated. The ER doctor consulted with the infectious disease specialist and decided they would admit him and treat for Kawasaki's if a strep test was negative. Well, the strep was negative and we were admitted. The attending doctor and residents decided they were not sure about proceeding with treatment because he had not had consistent fevers at home and no sign of fever in the hospital. They decided to monitor him and then do an echo the following day. His rash had mostly disappeared at this point and his eye, lip, and tongue redness would look better at times and then get bad again. My son remained in a mostly good mood through all of this. On Thursday evening we were told that the echo done was completely normal and they were comfortable discharging us without doing an IVIG treatment. They said that his symptoms were most likely the result of a virus. He seemed to be getting better at that time and I was relieved that he probably didn't have Kawasaki's.

Well, his eyes have continued to be red. Lip and tongue redness comes and goes. Yesterday, my mom noticed some peeling around his thumb and then noticed some peeling on his heel and the knee on which I first noticed the rash . He generally gets up in the morning looking like he is better, but by evening he looks very sick with a puffy face and blood red eyes, lips, and tongue. Here are the symptoms he has had:

- Red eyes for two weeks
- Lacy rough rash that comes and goes
- One sided lymph node swelling
- Strawberry tongue that comes and goes
- Red lips that comes and goes, recently some chapped peeling on his top lip
- Mild fever for a few days about a week ago
- Mild fatigue and crankiness
- Very mild peeling around his thumb, on his heel, on his nose, and on his knee
- Puffy face in the evening

He doesn't tend to present with all of these symptoms at one time and for the most part he looks well, but I am very concerned that he might still have Kawasaki's now that the peeling has started. I'm not sure what to do at this point. His pediatrician doesn't seem to know much about the disease and never seems very impressed with his symptoms. I am sure that I would be dismissed if I take him there. Are there any tests I should ask them to do? Any advice or opinions would be appreciated. Here are a few pictures.

Hello,
I read your post and was shocked! We are the very same boat. My son is 7 yrs old and is also a Type 1 Diabetic. Last Sat we noticed a HUGE 1.3cm lymph node on he back of his neck and a slightly smaller on at the base of his head (back). I took him to Immediate Care on Sun and they thought Strep-but it came back neg. On Monday I followed up with his pediatric doc and when we got there he had developed a rash on his belly (not itchy) she too thought strep and did another culture-came back NEG as well. So she then decided with the help of his endo and I to run a CBC and ESR. She prescribed him a stronger form of Amoxicillin and we went hm. Mon night the rash had spread to his legs and feet and his right bottom foot became VERY inflamed (red) and itchy. On Tues. back called with test results of all normal. She said its most likely a virus and that Tues would probably be the worse day. Wed. afternoon he was very tired like and fell asleep on the couch (meanwhile the rash had spread all over his body and drove him nuts with the itching)when he woke from his 3 hr nap he threw up (yellowish-nothing he ate) and then developed a fever (1st fever) of 101.5 I have him IBprophrine. That night his fever returned at 102.6-more IBprophrine. Thurs am he woke with a fever of 103and blood shot eyes (looked like he hadn't slept in days) more IBprophrine. Call doc Thurs afternoon and they wanted to see him. When we got there and I told her all this new info and she noticed his strawberry like tongue and cracked blisters in the corners of his mouth. She instantly thought Kawasaki (I never heard of it) she all the hospital and talked to a feel other docs and they all said to have him admitted and monitor him for Kawasaki. Well it's Sun am (over 1 wk later) and his fevers while in hospital only hit 101ish and although the infectious disease specialist says he has all the symptoms of Kawasaki he is lacking the fever and therefore most likely will NOT receive the IVIG. They have run the CBC and ESR everyday since he was admitted and his WBC and ESR are only slightly elevated. Yesterday was day 4 for fevers and he hit 101.5 but they wanted one more day at 101 or higher and of course he only hit 100.7. They ran more blood wrk but I am afraid they are going to send him home without treatment and he will develop complications with is coronary arties later in life.

MY QUESTION....
I was provided a name of a specialist out of Children's Memorial Hospital in Chicago- DO I call this doc for a second opinion?

Has anyone else received treatment of IVIG with such mild to moderate symptoms?

Any advise would be GREATLY Appreciated!
Thanks!

Hello,

My heart goes out to you. Let me tell you that my story was similar but my toddler ended up in intensive care and is recovering at home. My little boy had a fever on a sat. We went to out of hours doctors and was told it was mumps. We came home and was given painkillers on the Sunday he had a rash. We were told it was a viral infection. He was given antibiotics and told to come back in a weeks time. My son had a fever, rash, cracked lips and swollen neck and was losing lots of weight as he couldn't eat. By Friday we were in accident and emergency. By Saturday we were rushed by ambulance and he was on a ventilator. We were lucky to be in a hospital that has a team dedicated to Kawasaki. He had to have a blood transfusion and antibodies and ended up having three treatments until his temp was stable. So glad we kept on going back to the hosptal. We are still awaiting test as he actually had a bacterial infection. We have been advised that it will take 6-8 weeks until our son is back to normal. It was a very frightening time. It was a shame that he was mis-diagnosed twice and mistakes do happen. We were lucky that we caught it within the ten day period.

To the original poster, have you taken your child to a nearby children's hospital or any emergency room? If not, please do. This disease can possibly damage a child's heart. I waited a week before taking my daughter back then and regret it terribly now for all the suffering she never had to endure if I had just listened to my gut. Your gut is talking to you now, please take him! It can't hurt to be wrong but it can hurt if you are right and do nothing about it. Take care and I really hope he is better soon.

ReenaYS wrote:MY QUESTION....
I was provided a name of a specialist out of Children's Memorial Hospital in Chicago- DO I call this doc for a second opinion?

Has anyone else received treatment of IVIG with such mild to moderate symptoms?

Any advise would be GREATLY Appreciated!
Thanks!

My answer is:

YES

Please go to your nearby children's hospital. Again, it can not hurt if you are wrong but it can hurt your child if you are right and do nothing about it. Our children can't take themselves anywhere for help, only an adult can. Hope your child feels better soon!!