My six year old had Kawasaki

Personal stories of individuals and families affected by Kawasaki disease

My six year old had Kawasaki

Postby trevsmom » Thu Jan 14, 2010 3:33 pm

My six year old son Trevor was diagnosed with Kawasaki disease on November 24, 2009.
Here is his story:

On Nov. 17 he woke up complaining that he didn't feel good and he didn't want to go to school. He had a fever of 101, but no other specific symptoms.
The next day 11/18, he woke up fever free and feeling better so we began the 24 hour count down to return to school, but by noon the fever was creeping back up, his nose was runny and by 4pm the lymph nodes on the left side of his neck up near his ear were visibly enlarged. The pediatrician wanted to see him, so we went to the office where she diagnosed him with what was most likely a virus that was overwhelming his nodes. The antibiotic Omnicef was prescribed due to the size of the nodes and we went home. In the middle of the night his fever had spiked to 104.

The next day 11/19 he woke up vomiting.Over the phone his Dr. thought it was a combination of the fever (which had settled down into the 101 range with occasional spikes to 102-103), and the medicines upsetting his stomach so we began the tummy settling regime of ice chips, and little sips of electrolyte fluid etc. By mid day his tummy had settled and he was able to eat a few bites of crackers and applesauce and take his antibiotic but it was difficult to get him to drink fluids willingly.

Friday morning 11/20, he was feeling better, a little achy, still feverish, but better. Mid day he began to complain that he couldn't tilt his neck up. He could look down, and side to side, but not up without pain. He had been lying around so much that it was conceivable that the contorted positions he was in was causing neck and body aches.

On Saturday 11/21 he was hovering in the 100 -101 temp range and he had a rash in his groin area and stomach that was a little itchy, and thought to be viral or antibiotic related. After talking with his pediatrician on the phone, we didn't give him the antibiotic that night and by Sunday 11/22 the rash had spread and developed even more and he was still spiking fevers on and off. On the advice of our pediatrician we went to the Children's Hospital Close to Home urgent care center. The nurse took one look at the rash and after listening to the events of the previous week said "strep." After looking in his mouth (swollen in back, strawberry tongue) the Doctor who saw him thought strep too, but when the rapid test came back negative, he consulted the Infectious Disease doctor on call who said that the first antibiotic could have begun to work enough to effect the rapid results so he advised them to take blood and run it for strep and mono and they also ran a CBC and the first sed rate then as well. We left with a new antibiotic (Amoxicillin) for the suspected strep. Our pediatrician called us later Sunday evening with the results that had come back so far. Nothing specific was indicated by the numbers of his CBC or his sed rate. It was 20 which was elevated, but not into the range where the infectious disease doctor began to suspect anything. The strep test was due back the next day so we gave him his Amoxicillin for strep and Ibuprophen for the fever and body aches and put him to bed.

The next morning, 11/23 he was looking the worst that he had so far, and he was still refusing any quantity of fluids. I called his doctor for the rest of the results and to tell them that I felt he was dehydrated since his lips were now really chapped, and he hadn't urinated in 20 hours. I wanted him to be seen again that day and they advised that instead of bringing him to the office, I take him to Children's Hospital where they could start the iv fluids if they were needed, so off we went. He was assessed by the ER staff and more blood was drawn. He was hooked up to an IV for fluids. The doctor in the ER noticed that by this time his eyes were looking a little pink and this was the first time Kawasaki's was mentioned as a possibility. His sed rate had increased to 40. He was admitted to the Infectious Diseases ward for more tests, fluids and observation.

By the next day (Tuesday 11/24, one week since he first felt sick...) after every possible swab, dip and blood test ruled out anything else viral or bacterial, he was diagnosed with A-typical Incomplete Kawasaki Disease. The only symptom he didn't have was swollen hands and feet. An initial Echo-cardiogram was done with no significant findings other than a slight dilation of the main L coronary artery that was just over the normal reading.A CAT scan was done of his neck to check for abscesses but only revealed a string of inflamed lymph nodes on the left side. High dose Aspirin and IVIG was administered over night, he tolerated it well. He was fever free when the iv treatment ended, but 5 hours later, he was up to 101 again. The ID doctors decided to give him the full 36 hours to respond, but he was still running temps between 100 and 101 during that time and feeling really crummy. The second IVIG was administered along with continuing high dose aspirin and he again tolerated it well and we began to see some resolution of his symptoms. His eyes cleared a lot, his skin began to peel in the groin area and the fever had come down into the 99.8-100 range. He was feeling a little better, but still resistant to drinking and he had no appetite and he was anemic. He was in the hospital for a total of 8 days. At discharge he had a CRP of 6 (initially I believe it was about an 8 ),and his hemoglobin was at 7.6 He remained on High Dose aspirin for 24 hours after we came home, and then reduced to one a day. He continued to recuperate at home, and we followed up with the Infectious Disease doctor 3 days later. At that time his CRP was 3 and hemoglobin was at 8.4 so there was some improvement. He seemed to be feeling better, his appetite was much improved he had no fevers, but his temp remained in the 99.8 range he became tired very easily and took a lot of naps that week.

The following week he had a follow up with the pediatric cardiologist at the hospital. This was one week post diagnosis and 2 weeks after onset. He had been out of the hospital for a week. At this visit, it was discovered that he had 2 large aneurysms on his coronary arteries. He was prescribed Plavix along with the aspirin and put on activity restrictions – no gym, no running or active play – until his next follow up 4 weeks later. He returned to school for the first time the next day, Wednesday, December 9. He is in first grade this year, so he has class all day. He was still too tired and weak to do the full day, so for the remainder of the week, he only went for half days. The following week he went for the morning, came home mid day for lunch and a rest break, then finished out the day at school. Fortunately he had 2 weeks off for Christmas Break, so he was able to take more time to recover and gain strength. He had a follow-up blood test on December 18 that showed an increase in his hemoglobin 10.2 and his CRP had gone down to 1.5 so there was improvement.

Fast forward to the New Year. He went for his cardiology appointment on January 5. We were so hopeful that there was some improvement, but unfortunately we were told that his aneurysms had grown and were now just over the line into the “giant” category (measuring 7.9 and 8.2). It was recommended that he be admitted that day to begin anti-coagulation therapy with Heparin and introduction of Warfarin. We went home, packed some things, had a nice family lunch at Trevor’s favorite restaurant, took him to pick out a new toy to take with him to the hospital and then “checked in” for a lovely 4 night stay at Nationwide Children’s Hospital. My son is a bright, funny, adaptable kiddo who kept telling everyone how silly it was that he had to be in the hospital when he wasn’t feeling “sick.” After 4 nights, and countless blood draws, he was discharged and sent home on daily aspirin and warfarin and continuing activity restrictions.

We will have weekly or bi-weekly checks of his INR for the warfarin and he will see the cardiologist again on February 9 for another round of x-rays, echo, and EKG. Based on that visit, we will map out the next phase of follow-up. If no further growth of the aneurysms is detected, and the inflammation markers in his blood show normal results, we will schedule an exploratory angiogram for spring. Trevor is very anxious for the February visit because he really wants to get back to more active play! Try keeping a 6 year old boy from running – it isn’t easy!! All in all, he is doing well. He feels good, has as much, if not more energy than before he got sick.

My husband and I on the other hand are still reeling and trying to wrap our brains around how one day we had a perfectly healthy kid (well, OK, he has a peanut allergy and his share of common coughs and sniffles, but that’s about it) to one who is now facing a lifetime of heart issues. It’s amazing what a little known; rare childhood illness can do over the course of a week!
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Re: My six year old had Kawasaki

Postby codyash » Mon Jan 18, 2010 6:18 pm

That story sounds so familiar. My 11 year old son was diagnosed with kawasaki right after New Years. In his first echo we were told that he has one enlarged artery, but that it is normal for 30% of the population. We were also told that it was only a baseline echo. We go back again on the 27th for a follow up. I hope everything is okay and the cardiologist is right about the 30% of the population.
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Came back from ER, Kawasaki can't be ruled out

Postby rosy6 » Tue Jan 19, 2010 11:21 pm

This sounds similar to my daughter's story. Here's her timeline of events:

Wed, Jan 13, 2010--My daughter wasn't feeling well after school, she slept right away. Later in evening fever of 102. Husband calls me at work, she vomited and complaining of abdominal pain. Tylenol given.

Thurs, Jan 14, 2010--Very sleepy, not like her at all. Complained of severe abdominal pain, cranky. Did not feel hot when husband went to work at 7am. Came home at 8:30am. Felt her neck and was burning up, temp 102.5. Brought to docs and fever is 104 and was like a "ragdoll" as per the doc . Diagnosed with "stomach virus" and went home. Didn't want to eat and drank very little due to nausea and pain. Bought her ice pops, licked it a couple of times but didnt' want to eat it! Ice pops is her favorite treat.

Friday, Jan 15, 2010--Sleepy, didn't want to eat. Complained of abdominal pain again. Seemed to bother her more in the morning. Fevers all day about 102's, tylenol basically every 4 hours but by 3 hours I can feel she starting to burn up. I believe I started giving motrin that evening. Also complaining of her right jaw and neck hurting (could have been earlier than today).

Saturday, Jan 16, 2010--Severe abd pain again with fever. Symptoms seemed worse in the morning, I guess when her fever is at it's highest. Cranky, abd pain, fever, minimal drinking and not really eating. Gave tylenol and she vomited. Called the doc's office. At the office, fever is down, 98.9 (feels hotter than that). Feels better, abd not tender. Only blood test ordered and went to get labs drawn. Fever again later that day.

Sunday, Jan 17, 2010--At 3am wakes up, complaining of severe abd pain and fever. Gave her motrin, felt better by 4 am but decidely brought her to ER. Fever down to 99.6 in ER. Told doc blood work done day before. Doc asked me if anyone called about results, answer is no. Asked about blood work results, WBC 23.6! Other labs off but not mentioned. Doc ordered more blood work, cxr, ultrasound, IVF for dehydration and later she had ordered xray abd. Blood work came back, WBC 17.8 trending down but still high, hbg from 11.4 to 10.8, plt 403 to 412 (normal), amongst other labs being off,CRP 15.1 TO 12.8 very high, ESR 67 to 83 high as well. By about 10am all radiology test, including two ultrasounds of the abd with the second read directly by the radiologist was nonconclusive. Blood culture pending, urine culture showing large ketones and mucous with few bacteria, flu neg, mono neg. At 11am I can feel she's getting warmer, temp 99.4, tylenol given. She slept a little and by 12:30pm started to eat lunch. Not too much of an appetite and complained of abd pain but able to eat and drink. Sent home, diagnosed with virus. Fever later that day of 101.5 and abd pain and right neck/jaw pain. Called pediatrician, give mortin and see dentist in the morning. Then call with updates.

Monday, Jan 18, 2010--Still complaining of abd pain, fever 101.3. Called ER and spoke with a nurse practioner and said all cultures negative. As she states, poss a viral infection which can even last for 10 days. However I'm not accepting this answer as my daughter never had an fever greater than two days. Anyways, brought my daughter to dentist and took panaromic view of jaw/skull. No evidence of abscess despite cavities. Went to pediatrician and ordered Omnicef . Gave first dose about 4pm along with motrin, fever of 101.3. Went out to eat late about 9:45pm, (we were hungry) and I can see my daughter's eyes getting pinkish. Thought she was just tired but something she's never had before. Gave motrin at 11:30pm.

Tuesday, Jan 19, 2010--No morning fever, finally. She actually slept a little longer. When she woke up her eyes are still pinkish. Read side effects of Omnicef and stated yellowish eyes but but pinkish. Waited sometime to see if it would go away. By approx 1pm left a message with the doc regarding her eyes and her not pooping for days since her sickness. When she called backI got a slew of questions...is her tongue red, hands swollen or peeling, answer is no. But I notice a faint rash on her chest. And after the doc saying too much over the phone she stated Kawasaki disease. Got nervous especially with possibility of IVIG. But looking at my daughter she is otherwise playful and temp has not gone up to 101, max was 100.5. Called hubby and went to the ER when he arrived. Reached ER about 3:45pm (had to pack, wait for hubby and quickly ate en route). Doc assessed my daughter and said it doesn't look like Kawasaki but noticed her conjuctivitis and faint chest rash. Discussed about platelets should be higher about the 5th day of KD. So about 6:30pm platelets are higher but can't conclude KD. However WBC is down at 14.9, hgb 11.8 (from 10.8). Other labs still pending. She spoke with a cardiologist and since no fever today, 99.6 in ER, echo not needed per cardiologist. But to follow up with pediatrician in the morning who may order an echo. So I asked if my daughter may have an KD and if her body is taking care of it. She said she may have had a mild case. As the doc states, many older people have heart problems (in relation to a virus)but never knew they had KD. Doc also mentioned that the cardiologist had also agreed that my daughter had labs test and symptoms that are like KD thus can't rule it out. Before we left I asked if other labs drawn besides CBC. CRP is down to 4.6 (from 15.1 Sat to 12.8 Sun), still high but improved. As we drive home I review her other labs K 5.8, ast 80 (from 19), alt 101 (from 23), ESR 84 (from 83). So why are these labs getting worse and not improving? I'll ask the pediatrician that in the morning. Btw, still no poops from last week. But abd pain is so much better today and no complaints of jaw/neck pain.

So this is where we are. Temps today from 100.5 to 99.6. She will be following with the pediatrician in the morning. I am hoping to go ahead with an echocardiogram and inquire about the blood work. Eyes still pink, lips appear dry and peeling, tongue pinkish but with large bumps and no obvious rash and very much playful.

Thanks for listening.
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Re: My six year old had Kawasaki

Postby trevsmom » Wed Jan 20, 2010 10:27 am

Rosy6, let us know what the pediatrician says. It really stinks that there is no conclusive test for Kawasaki. Some of your daughters labs are consistent with KD and it seems to me that an Echo might be prudent. From what I read on this and on other sites, sometimes the Echo can help with a diagnosis.

You could ask your peditrician if you should try some Miralax for the no poops.
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Re: My six year old had Kawasaki

Postby rosy6 » Thu Jan 21, 2010 1:42 pm

Okay, just came back from the pediatric cardiologist. I definitely would recommend this doctor to anyone. Very knowledgeable, down to earth and great with children. And just on the side the grew up with my daughter's pediatrician's brother...small world. Anyways, Camille is my daughter's name. The doc assessed her and said she had a small murmur but common with viral illnesses. Echocardiogram was done in the office and everything looked good. Only thing is that her LAD is slightly prominent but still considered normal. However since it's said that most of the aneursyms start in the LAD with Kawasaki syndrome, Camille will have a follow up echo in one week. But then he said, if there's a problem it will show.

The doc did state that most KD resolves on it's own and that we overtreat. I believe he said about 15% of pt's with KD that are untreated affects that heart so it's a very small percentage. He also mentioned that in Japan they don't treat KD! But they what they do is treat if and only when necessary because of the high incendence of allergy to IVIG. But in Camille's case, there's no treatment as of right now but to repeat the echocardiogram in one week. Ooops just as we speak the school nurse called back. Today was the first day Camille went to school. Eyes still red but no fever for 48hrs. Now I am told she has a tummy ache. Oh goodness not again because this was her comlaint before. But it can also from her not having a bowel mov't for one week. Yes, I'll try the miralax on her, thank you. I just want this roller coaster to end and go back to normal.
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Re: My six year old had Kawasaki

Postby Momcat » Thu Jan 21, 2010 2:25 pm

Rosy6
They treat Kd in Japan all the time and usually at day FOUR if possible. They are more aggressive than in the US because they see it more and diagnose it faster. A child that does NOT get IVIG is at a much higher risk of aneurysms and damage. The odds are 25% without IVIG and 5% with it. KD can be ongoing without a fever. I've never heard comments like that out of a ped cardiologist before and I for one would be very skeptical about his comments. KD fevers are known to flare, calm down and return. The allergic reaction is NOTHING compared to aneurysms and the % of cases that are allergic can be caught immediately and they can continue Tx with steroids or something else. IVIG allergies are not commonplace with KD, but they do happen. I'd rather have that than a child with aneurysms. I'm imagining they are saying this because your child did NOT get IVIG?

A "slightly prominant" LAD means she has had some damage to her coronary arteries. The follow up echoes are usually done about 4 weeks after the initial echo with KD........it can take that long for aneurysms to occur. You should get on the AMHA website and read the stats on KD and the treatments....be aggressive as a mom, it is better to be safe than sorry with KD.

The cause of KD is unknown---we don't know if it is caused by a virus or not.

Our daughter was 6 went she had KD and it lasted for months, but the time she had started aneurysms they continued to increase---within a week they were giant-- the are super giant now. Stomach aches are generally from the gallbladder which gets "sludgy" during acute KD. Tylenol works, see if she can keep it down....liquid might be better and absorb faster.

Let us know what is going on.
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To Momcat

Postby rosy6 » Fri Jan 22, 2010 11:22 pm

Hi, I greatly appreciate your concern about my daughter's health. When it comes to atypical KD, the cardiologist did say it's hard to diagnose because of the criteria and he realizes this and believes that other things need to be done to help diagnose. I have read that aneursyms occurs I believe 2-4 weeks after the fever subsides. The follow up echo wil be on Wed or Thurs. If that shows anything other than a slightly prominent LAD like last time I will definitely put my mouth and about IVIG. I see what you say about the percentages of nontreated KD as opposed to treated w/ IVIG. But currently the doctors weigh out the risk and benefits before giving it. Honestly, when my daughter was in the ER for the first time, I just wish she would have had her red eyes at that time. That may have given her the diagnosis. But it came after the day after and was brought to the doctors attention the day after that. By that time, Camille was bouncing around and like her happy go lucky self. I understand the cardiologist point of view and I will wait for this coming week. What I didn't agree with was the covering pediatrician who told me that it can't be Kawasaki because Camille, though with her red eyes, was bouncing around fever free. And that people with the syndrome are not like this but would need to be treated with IVIG. I don't appreciate it when doctors don't bother listening to the parents and just keep saying what they think is right. All of the doctors seemed to listen though except for this one. Like you say and what I've read in other posts, it comes and goes. So we'll see on Wednesay and believe me, I will put things into prospective if my daughter's coronary artery shows even more prominent than before. And I will make this known to all the doctors who saw my daughter and bring it to their attention. Not so much as to say, I told you so, but to inform them of situations like this and not to be so much into textbook but looking at the picture as a whole and not to be afraid of diagnosing a person. Though I would like to know if there was anyone that was diagnosed with KD that was never gotten IVIG and was okay in respect to their arteries. I'll probably post a thread on that. So right now, Camille is will occassionally mutter a tummy ache but she seems to say that now and then without nausea or vomiting. But she is very active, still has red eyes, when will that go away? Cardiologist said normally in a couple of days but it's since been Monday and now it's Friday. But she's eating well now, she stated she had a BM but her belly looks slightly distended, but is a skinny girl. I've been giving her some metamucil since I had it for myself. I'd give it to her with water but she doesn't drink the whole thing. Anyways, I keep you posted on her next echo and if anything changes before then. Thanks so much momcat for all your attention and help.
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Re: My six year old had Kawasaki

Postby Momcat » Sat Jan 23, 2010 2:22 am

I'm hoping the odds pay off and your child will have nothing more seen on the next echo.
The red eyes are bothersome-my opinion is they are red because the capillaries are still swollen throughout the body. A child seems to feel a whole lot better with a low grade temp vs a high temp. Tylenol usually works if it is gallbladder pain, but then you kind of mask the fever somewhat also.
All the best and let us know how she is doing and what you find out about your survey on kids that weren't treated with IVIG.
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Re: My six year old had Kawasaki

Postby trevsmom » Tue Nov 16, 2010 3:41 pm

Tomorrow morning marks the 1 year anniversary of Trevor getting sick. It's hard to believe that waking up with a fever one random morning in November has forever changed his life.

I have learned a lot in the past year. Obviously, I know more about KD, coronary aneurysms and warfarin management than I ever wanted to know, but mostly I learned that no matter what, always kiss your kids goodnight and tell them you love them because you never know what challenges and changes tomorrow will bring.
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Re: My six year old had Kawasaki

Postby MikesMom » Tue Nov 16, 2010 7:10 pm

but mostly I learned that no matter what, always kiss your kids goodnight and tell them you love them because you never know what challenges and changes tomorrow will bring.


How true this is!
All the best
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Re: My six year old had Kawasaki

Postby 21472wen » Thu Dec 30, 2010 9:04 pm

How do you know when to stop worrying? My heart is breaking when ever i see his pain and as he watches his sisters and cousins play. He tries to play but his joints hurt and is still very weak. We just got out of the hospital on the 23rd of Dec. after just under 3 weeks of torture and misdiagnosis. What a nightmare!!
Wendi
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Re: My six year old had Kawasaki

Postby bmcgill » Wed Jan 05, 2011 10:57 pm

I second the question about when does the joint pain and other symptoms end. I believe my 5 month old still has joint pain after 1 1/2 months and still has swelling and cracking of her lips. They say her sed rates are still real high. Why? Why? Why?
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Re: My six year old had Kawasaki

Postby trevsmom » Thu Jan 06, 2011 12:50 am

Well, at one year out I can say that I never have really stopped worrying, but the worry becomes different and more manageable. You learn more about the disease and if, your child is left with long term damage, you learn more and more about how to deal with that. The key is to find knowledgeable medical professionals that understand KD that you trust and you can call on with questions.

As far as the joint pain and lethargy, remember that recovery is a long and ongoing process. Sure, once the fever is gone and things look generally better, they let your child leave the hospital, but they are still in recovery. My son was weak, anemic, clingy and tired very easily for weeks after discharge. He was home for a week and a half after the hospital and even then he could only handle half days of school for a week and then for a week we split his school days so he could come home for an extended lunch and a rest. Fortunately, the Christmas break was the following week or he would have continued the modified schedule. The winter holiday worked in our favor.
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Re: My six year old had Kawasaki

Postby sunnimom4 » Thu May 05, 2011 11:57 pm

My son is supposed to go back to school next Tuesday. I'm scared! He has only been out of the hospital for 4 days. He still has joint pain, fatigue, small headaches, pale looking skin, etc. The list goes on and on. Any recommendations? Luckily schools out here at the end of May :O)
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Re: My six year old had Kawasaki

Postby Nancy » Fri May 06, 2011 1:35 pm

Mom knows best :)

What grade is he in ? If he's not old enough to have to worry about missing a Chemistry test...why not wait and send
him back on perhaps Thursday....2 days, Thursday and Friday would get him back in the routine and also be a short enough
week for him not to get overtired :)

If he is only preschool or Kindergarten...why not keep him home all week ? Not much to miss at that age..and you and he
will both feel better :)

My son was diagnosed with KD on the first day of 2nd grade...tough timing...he worried that they wouldn't have a desk for him :)
I kept him home for a week and then sent him 1/2 days for another 2 weeks...better for both of us...school was fine about it...

Use mom's good judgement...we know our kids best ~!

best,
nancy
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