The Kawasaki Disease Forum

Hi. My just-turned-7-year old son has been sick for about a week. Last Monday and Tuesday, he had cold/cough symptoms including slight fever. On Wednesday morning he seemed improved but by evening, he had *really* bloodshot eyes without gunk and a fever that went up to 102.6. Our local clinic had no appts, so his dad took him to urgent care on Thursday. They said ear infection and gave rx for amoxicillin, which he started that night. Friday his fever went up to 103.9 and his lips were bright red and peeling. He slept all day and hardly ate anything. His dad had him over the weekend and said that he was still running fever and that it wasn't responding to tylenol, and that he wasn't eating. This past morning (Monday), he took him back to urgent care (still no clinic appts). They said virus and ear infection but also noted a "slight rash" on his legs near groin. They ran some labs but I have no idea what they were and they never gave the results to us. At this point, his lips had pretty much peeled right off except for one big flake sticking straight out. Monday evening, his fever was at 103.6. He'd eaten barely anything and just wanted to curl up under blankets and sleep. He's had plenty of ear infections in his life but I don't recall any having a fever that lasted this long (or relatively high) after starting antibiotics. And he usually otherwise seems alright with an ear infection in terms of appetite and energy.

I started googling. I found Kawasaki, read a bit (I actually read a bit when I was googling about his red eyes, but dismissed it), and suddenly remembered that the skin on his fingertips started peeling at some point...last week? Maybe when he first got sick with the cold symptoms, maybe the day he got the red eyes. I just can't remember because I didn't think much of it at the time - I thought it was *really weird* but I thought maybe he's playing on his dad's ipad too much? But everything I've read about Kawasaki says the peeling comes weeks after the initial symptoms. Has anyone heard of it happening earlier? Does this sound like possible KD?

And I apologize that it gets a bit ranty from here... Tonight (Monday night), as I was reading about KD, he woke up and said his tummy really hurt. So I said, that's it, we're going to the ER. On the registration I wrote "fever more than 5 days, red eyes, abdominal pain", I told the triage nurse all that and about the peeling and the rash (and ear infection, earlier visit to urgent care, amoxicillin), I told the next nurse all the same. After a 3 hour wait, an ancient doctor wandered in and said, "So he has an ear infection?" and proceeded to look in his ears as I again explain *all the things* that were going on. And he said, "Yup, ear infection." He asked him to open his mouth (with his big flake of lip barely sticking on there), then waved the flashlight in that general direction but didn't even look. He didn't look at or ask about the rash. He didn't look at his eyes. Didn't feel his lymph nodes. Didn't check on or ask about the abdominal pain. Then he blah-blah'd about antibiotic resistant ear infections and said he was switching him to zithromax and sent us on our way. At this point, it was after 11pm, my son actually had been saying he was hungry (for 2hrs), so I just wanted to leave. I brought him home, made him two pieces of toast because he said he was starving. He ate half of one and then said he didn't feel well and fell asleep.

Can anyone offer any advice on at what point they would worry if the zithromax doesn't kick in? Should I try to find a pediatrician or someone who will actually listen to me/look at him? We live in a small, isolated town. There is only one dinky hospital (which runs the urgent care and ER) and one clinic that accepts our insurance (the one that is too swamped to have any appts for sick kids), and last I checked, they had no pediatrician working there any more. Am I just over-worrying? (I had a situation when he was 3yo, where he had a cough that just kept getting worse and worse, went to the clinic 3 times, the ER 2x before they finally said, "Oh yeah, a 3yo who can't breath is a big problem" and admitted him... Then his sister was diagnosed with Type 1 diabetes last year, so I guess I'm paranoid about things.)

Thanks for any help/advice/thoughts/etc you can share.

Im so sorry to hear your son is sick and that you feel like the nurses and doctors aren't listening to you. I'm not a doctor but my daughter was diagnosed with atypical kawasaki's last year, which means she didn't have all the usual symptoms that they usually look for to diagnos as kd. We were really lucky that our hospital recognized her symptoms as I've read a lot on here how many doctors and hospitals misdiagnose kd because it's so rare. Fundamental in any diagnosis as I've been told is the fever for five straight days. All the other symptoms you've mentioned are symptoms of kd (I'm not saying your son has it but they are the same that are related to kd, the link below lists typical kd symptoms) but you don't need all so if you still are concerned, go with your gut feeling and push for more help. The key is to see a pediatric cardiologist because you'll want your son's heart checked out. Hopefully your local er has one on staff or can recommend someone, an infectious disease doctor could also help with the diagnosis. After 10 days i dont think they can administer the ivig, but either way you'll want to make sure theres no damage to the heart. You mentioned this all started last week so you quite possibly are still in the window for your son to get the dose of ivig so I personally wouldnt wait for the new antibiotic to kick in and think you should really push until you get the help you feel your son deserves!

http://Www.ucsfbenioffchildrens.org/con ... ptoms.html

Hi

If your son is still ill and you are concerned he may have Kawasaki Disease, you need to go to the nearest Children's Hospital ASAP !
They will have pediatric cardiology available 24/7 at a Children's Hospital and be able to carefully evaluate him.
I know it is hard when you live in a small town ( I do too), but the drive is worth it to find out what is wrong with your child and get him appropriate care

best,
Nancy

Hi. Thank you for the responses. Unfortunately when I say small *isolated* town, I mean the closest children's hospital (where they air-ambulanced my daughter during her diabetes diagnosis and she needs to visit every three months) is more than an 8 hour drive away. My ex-in-laws, a retired oncologist and former nurse were apparently on board enough with my suspicions that they were telling my ex we needed to make the drive. (They don't know much - if anything - about KD but they felt that the lethargy, not eating, and fever for so long sounded like more than ear infection, and I agree, but maybe "just a virus" as docs said. Just don't know.)

Fortunately though, my son seems to be doing better today. He's been with his dad all day but he reports no fever and his appetite is somewhat improved though he's still really tired. Ex also got a hold of the lab results - they had run a CBC and strep. They said CBC was normal and strep negative.

So should this be the end of my worries? Or should I still be worried that it *was* KD but the fever ran its course and it was "atypical." Admittedly, reading about all the atypical cases, I *am* still a bit worried and will be watching him carefully for awhile. I'm thinking I will try calling local(-ish) pediatricians (if there are any...) to see if anyone will see him just based on the concerns I've mentioned here. From what I read, urgent care and the ER *should* have considered KD just based on the fever of 5 days (like you mentioned, Atulp), especially with the other things going on, so I'm pretty annoyed with the local docs, but...I nearly always am.

I'm so glad to hear your son is doing and feeling better,that's great news!! However, I still think you should go with your intuition and even if just for peace of mind, get your son checked out by a cardiologist. All of the symptoms of kd do go away on their own even without the dose of ivig, the lingering problem though is with the heart (dilation of the arteries or even aneurysms ). These issues can go undetected after the kd symptoms but can be detected via an echocardiagram. Children that have kd are monitored for at least 6 weeks after the symptoms vanish (often on an aspirin regimen) and then have subsequent check ups every 3 years. Our daughter thankfully didn't show any damage afterwards but we our going to the cardiologist in a couple weeks for a one year check up bc I wasn't comfortable waiting 3 years for another follow up. This can be a very serious disease especially if the hearts been impacted!

As mentioned, I'm so happy your son is better now but a mother's intuition is special and it sounds like you and your entire family will feel better knowing for certain and making sure your son really is 100%. If you can, push for a pediatric cardiologist appointment!

hi

CBC and strep test do nothing to help diagnose or rule out KD.

Diagnosis of KD is a diagnosis of exclusion, there is no specific test for KD.

I understand "isolated", I grew up on an island !

However, an 8 hour drive to provide answers and peace of mind as to whether or not your son had/has KD seems very worthwhile to me !!
Can you fly to make the trip faster ?

A child who has undiagnosed, untreated KD will recover from the acute symptoms of the disease (fever, red eyes, red tongue, malaise, etc)
BUT, the cardiac damage can be occuring...

A trip to a Children's Hospital would be my choice....

best,
nancy

Hi again. Firstly, let me say thanks so much for your responses. I'm so sorry your children had to go through KD, and glad, Atulp, that your daughter didn't suffer any damage, and I hope yours is doing well too, Nancy. I'm so grateful that there is a forum like this that is a resource for people who have been through KD as well as parents like me who are worried.

My son still had no fever today. He ate a little more but his appetite is still nowhere near normal and he's still extremely tired and just telling me that he doesn't feel well. His eyes are still bloodshot (but not nearly as bad), and his fingertips are still peeling (but didn't get any worse). I noticed he looked really skinny, probably from barely eating for a week.

Our local clinic did hire a pediatrician and my ex managed to get an appt for next Tues. I'm going to call tomorrow and see if I can press on them the urgency of the situation. If that doesn't work, I might drive to the "big city" on Saturday or Friday after work - because it sucks but my stupid job won't accept mother's intuition as a reason for missing another day of work (missed 3 last week home sick with him, and 2 the week before for my daughter's trip to her big city appt). Unfortunately, flying out of here is way too expensive for me. And the insurance won't cover visits to anyone other than his main provider, unless it's the ER, so that's what it would need to be (which would seem weird since...he seems mostly fine *now*). And it's not a children's hospital, but it at least has a pediatric ward.

No need to thank anyone, nothing is scarier than having a child who is sick and worse yet when you and/or the doctors don't know really what's wrong.

If you are able to and haven't already, take some pictures of any symptoms your son still has. A lot of pediatricians never see cases of kd so even at the ER in the "big" city nearest to you it could help confirm the diagnosis. When we were in the hospital with my daughter (we actually went bc we were scared she was dehydrated, she was 14 months old and we couldn't get her to eat or drink, our pediatrician hadn't thought kd at that point), there were some residents there that mentioned that while in medical school they never expected to see a case of kawasaki's, to them it was just an answer to a question on a test.

Especially the fact that your son's fingers are peeling makes it seem like the doctors should really consider kd. I'm not sure of other viruses or illnesses that cause it, but it's often a tell-tale sign of kd.

Another suggestion, I personally didn't do it but have read that other parents have emailed Dr Burns who runs the kd research program at USCD / Rady children hospital directly when they were unsure of their child's diagnosis or the lack of help from local doctors. Looks like you can find her and the program's contact information online if you wanted to try possibly getting another (medical) opinion.

Hi

I don't know where you live...but, a "regular" hospital with a pediatric ward will not have pediatric cardiology available through the'ER and may not have anyone familiar with KD, let alone KD that might have been misdiagnosed !!

An appointment next Tues with a pediatrician is basically useless !
IF you think your son may have/had KD, he needs to be evaluated by a pediatric cardiologist ASAP !

I have been a KD Foundation parent volunteer for 12 years, I know it is not always convenient or easy to access the best care, but
your son's future well being could depend on it ! And if KD is ruled out, you will have lifelong peace of mind that you sought the best evaluation for him and that there was no long term damage done.

Please don't wait and don't settle for less that a Children's Hospital !

best,
Nancy
KD Forum, moderator
KD Foundation volunteer

Well, earlier today, my ex managed to speak to a cardiologist (not sure if it was a pediatric cardiologist) at UC Davis medical center, which is the "big city" hospital I've been referring to. They said they could check him out with a referral. (Also, I realized that they call their children's ward "UC Davis Children's Hospital" and they do have a pediatric endocrinologist on-call, so maybe ped cardio too.) The problem is the referral. Ex called our local clinic and got to speak to the pediatrician and she can't give a referral without seeing him (and apparently can't see him any sooner than Tues) and she said to bring him to the ER of a particular hospital that is 2.5hrs away from where we live which she claimed is a good hospital. So my ex is there now in the ER waiting room...

Wow. So, they said his inflammation markers are high, so after initially "leaning away from Kawasaki" according to ex, they are now realizing he probably has it. Unfortunately, as y'all said, they are not a children's hospital, so they're on the phone with a doctor at a different big city hospital apparently having a crash course in KD. Ex said "the pediatrician diagnoses it and the cardiologist treats it." I'm really hoping they will just be able to transfer him to UC Davis.

I'm so glad the doctors took your concerns seriously and your son is finally getting the proper diagnosis and treatment. He's very lucky to have such a loving mother and father who continued to fight or him! Best of luck to him and your entire family.

hi

I am relieved to hear that progress is being made in getting appropriate care for your son !

I would say that in this situation, which could be serious, one should not "wait" for a referral or a pediatrician visit !
If you feel your child should be seen by any specialist....call and make that appointment or go directly there...the
insurance folks can figure it out later !! It is your child's health that is important, not the insurance company

Good luck,
Nancy

Hi. Thought I should update. My son was in the small-but-much-bigger-than-my-town hospital for two nights. They had a pediatric ward but for diagnosis and treatment, they were on phone with a children's hospital in Portland. The first night they did an echo and an x-ray (? -is that a thing that's normally done?) and faxed it to ped cardiologist at the Portland hospital. They said everything looked ok except 2 arteries that they "couldn't get a report on." They decided because of that, and his inflammation markers being still high, and the timeline being confusing (it was apparently more confusing for them because my ex was confused), that they'd give him the IVIG. So that wrapped up the second night and they let him go on Saturday, after giving him a flu shot. He was (and is) on aspirin 81. They said to get another echo in two weeks.

On Saturday, I drove to yet another small town (but still much bigger than the one I live in) to trick'or'treat and visit my mom. He threw up twice on the car ride, which isn't unheard of for him, but...he hasn't done it in a long time. When we got to my mom's, he got his costume on and decided he was too sick to go out. I checked his temp and it was 99.9. I checked awhile later and it was 101. The hospital said to bring him back if he got a fever, so I brought him to the local ER and explained the situation. He threw up again while we were in ER. They admitted him for observation. His fever never went up as high as 101 again and went away after Sunday morning, and his labs were okay (and they were consulting with UCSF since they don't have much KD experience either), so they let us go on Sun with promise to check him for fever every few hours and keep our appt with our new local ped on Tuesday.

His energy and appetite both came back with a vengeance by Sunday night. The new pediatrician on Tues asked a lot of questions and set their referral person to getting him another echo somewhere. The referral person called me on Wed. She said UC Davis (where I'd want to go in a perfect world) "rejects" a lot of their referrals. She said she could try the hospital he spent Thurs&Fri in or the Bay Area. My ex doesn't want to drive to the Bay Area (or Davis), so I said go ahead and try the other place. The caveat was that because it is out-of-state, our insurance would only cover the referral if they "treat 7 year olds"- which apparently they do because she called back and said it was all good. When I looked up them up online though, they don't seem to have a ped cardiologist. So I don't get it. I was gonna ask them about it on the phone, but they haven't called me to set appt yet. And it's now been a week since his original echo.

Actually, I think I'm going to start a new thread because I have some new questions that I guess at this point are kind of different from where I started out... I want to thank y'all again, because really, to have someone encourage me not to ignore mother's intuition and to take these things seriously, made a BIG difference.