Post-treatment symptoms

General discussion regarding Kawasaki disease
OliversMom
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Post-treatment symptoms

Post by OliversMom » Sat Dec 17, 2016 3:59 pm

My 5 year old son was diagnosed with Kawasaki Disease on December 10th and was treated with IVIG throughout the night. They had to reduce his dosage because it was causing his fever to spike.

The next day, he was feeling much better but by 4PM, he had a headache, vomited and again his fever spiked and he complained of chest pains. The pediatrician said his chest pain was likely due to his heart rate of 145 from the fever.

December 12th, the fever disappears and hasn't returned since. They kept him for another 24 hours to ensure the fever had broken. They do an echocardiogram and all is well.

We were released December 13th. When we left the hospital, his rash was gone, his eyes were almost clear and his lips were no longer red, nor was his tongue.

December 14th, his eyes are becoming red again and in the evening he is screaming about abdominal pain. We rushed him to the ER and all they did was make an appointment with the pediatrician for December 17th.

The same thing happens the next night and we take him again, this time the pediatrician comes to see us and suspects it is his lymph nodes in his stomach so he sets us up with an ultrasound the following morning.

Ultrasound reveals nothing. His abdominal pain has now been gone for over 24 hours.

Today, December 17th, he still has red eyes and he now has some scabbing above his upper lip where the lip meets the skin. His fingers are peeling, as well.

I have asked all the pediatricians we have seen about his red eyes returning and they've all said as long as his fever doesn't return, he is okay. But now his lips, too? Should I be concerned?

Nancy
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Re: Post-treatment symptoms

Post by Nancy » Sat Dec 17, 2016 6:54 pm

hi

Why is he being seen by a pediatrician ? They do not normally care for children with acute KD. He should be cared for by
a pediatric cardiologist.

Red eyes are the one of the last things to resolve after having KD. It is often more noticeable at night, as it is a form of
photophobia. But, it does not indicate any ongoing KD problem.

It sounds to be like he needs to be under the care of a pediatric cardiologist so that you know he is getting the best possible
care and that you have someone to ask these important questions to ! I used to email my son's cardiologist frequently in the
days and weeks right after he had KD :)

best to you both,
nancy

OliversMom
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Re: Post-treatment symptoms

Post by OliversMom » Mon Dec 19, 2016 7:33 pm

Thank you, Nancy.

He is set up to be seen by a pediatric cardiologist for his next echocardiogram in less than a month. But he was treated by regular pediatricians. They just kind of told us that the way it's usually handled here is that he will be treated at the hospital by a team of pediatricians, and then he will be seen by a pediatric cardiologist to follow up for his 6 week echo and the cardiologist will take it from there.

To be certain about my son's symptoms, I took him to Sick Kids for a second opinion and they spoke to a rheumatologist who said as long as his fever doesn't come back or his symptoms don't worsen, then he's basically okay and to follow up with the family doctor in a week (though that part seems pointless, to me), and then to see the cardiologist for the echo.

I noticed that today his eyes seemed a lot clearer during the day then they have been since wednesday and then tonight they were super red. So I just assumed it was due to the time or something. He's also back to being himself, goofy and playing with everything which makes me feel tons better. This whole thing is just so stressful, isn't it? I monitor him for fever every night and so far he has been fine. So all that's left to do, really is keep a close eye on him and pray the results of his echo are positive ones.

Again, thank you so much! There aren't many resources for this disease so it's nice to be able to talk to someone about it.

Jessica

Nancy
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Re: Post-treatment symptoms

Post by Nancy » Mon Dec 19, 2016 8:51 pm

Hi Jessica,

I didn't realize you weren't in the US, I apologize. You mentioned "Sick Kids", are you in Toronto ?
One of the best KD docs in the world, who does a lot of KD research, Dr. Brian McCrindle is at Sick Kids.

I'm glad to hear your son is feeling more like himself...it really takes about 2 months for children to feel better and
then it takes another month for their worried mother to feel better :)

Please feel free to ask me any other questions you might have on here or by private message, I have been a KDF volunteer since 2003.

Best,
Nancy

OliversMom
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Re: Post-treatment symptoms

Post by OliversMom » Mon Dec 19, 2016 9:57 pm

Hi Nancy,

Yes, we're about 40 minutes east of Toronto and we had taken him to the Toronto Sick Kids for the first time ever just yesterday for a second opinion on whether or not he needed another treatment. It was just the Emergency Department as I didn't think it could wait for a referral.

We are taking it day by day and I hope the day comes when we can all breathe a sigh of relief and not have it be a nagging thought at the forefront of our minds. He's always been otherwise healthy, and our 1 year old daughter is healthy, too so this has been the first thing to go wrong with either of the kids and it's agonizing as a parent.

Thank you so much for your help. You can bet I'll be back if I have any more questions.

Jessica

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Re: Post-treatment symptoms

Post by OliversMom » Thu Dec 22, 2016 2:21 pm

Hi,

So we were told to follow up with our family doctor who ordered repeat blood work to check our son's liver because his blood work before the Kawasaki diagnosis showed an inflamed liver. So we got the results today and they told us that his liver is improving and they want to see us in a month . Is it normal for his liver to still be inflamed or not quite right yet? He was treated on the 10th.

Thanks

Nancy
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Joined: Mon Apr 25, 2005 6:49 am

Re: Post-treatment symptoms

Post by Nancy » Thu Dec 22, 2016 10:07 pm

hi

I'm not a medical professional, but there are several articles in the medical literature indicating abnormal liver function
tests as being fairly common during the acute stage of KD.

I think you said he was diagnosed on Dec 10th ? If so, that's only 12 days since diagnosis and many lab values would still
be elevated at this early point. My son's pediatric cardiologist told me he didn't like to order blood work too soon as he
knew the results would likely show some values being off and not give him any new information, except to make parents
more worried !

take care, it gets easier over the next month or so,
nancy

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Re: Post-treatment symptoms

Post by OliversMom » Sat Dec 31, 2016 8:35 pm

Hi Nancy,

Thanks so much for always getting back to me. His temperature has been lower than usual the last few days. It's been hovering between 36.1C - 35.8C at the lowest. We are now concerned that it may be linked to his liver inflammation but our doctor is on vacation and I can't help but feel like it's pointless to take him to an ER because he seems totally fine otherwise. I just can't wait for this to be over!

Jessica

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Re: Post-treatment symptoms

Post by OliversMom » Wed Jan 11, 2017 4:50 pm

I'm not sure if anyone can help.

My son just had his second echo today and it showed that his coronary arteries are slightly enlarged although within normal range. The left one was 1.8mm and the right one was 1.9mm. He wants to do another echo in June. What things should I look out for with my son? What does it mean exactly? I didn't ask because he said it was within normal range but the more I think about it the more worried I am.

Any info is appreciated, personal stories, etc.

Nancy
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Joined: Mon Apr 25, 2005 6:49 am

Re: Post-treatment symptoms

Post by Nancy » Wed Jan 11, 2017 6:41 pm

hi

To be honest, these are questions for his pediatric cardiologist :)

In my experience with my son who had an enlarged coronary artery that resolved within 3 months, his pediatric cardiologist
gave him permission and encouragement to return to all his normal activities. He was 7 yrs old, so that meant swimming lessons
and playing soccer as well as physical education at school. He was not given any restrictions and I was not told to watch for anything.

However, only his cardiologist can specifically answer your questions.

Best,
Nancy

OliversMom
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Re: Post-treatment symptoms

Post by OliversMom » Thu Jan 12, 2017 12:13 am

Thank you, Nancy.

The cardiologist didn't say anything about restricting his activities. He said that the echo looked "pretty good" and that there was some "minor stretching" of the coronary artery but that it's within normal range because it's under 3mm and that basically we shouldn't worry. He has dealt with more Kawasaki cases than probably any doctor in our province so I should feel assured that he'd have told us any special requirements. He took him off the Aspirin and warned us that he will still experience bruising for the next week until the Aspirin totally clears his system. I think it's just my paranoia kicking in. I mean, my son has been fine this whole time. He's returned to his usual running around like a lunatic behaviour that he has always done, which is actually a relief for me because he wasn't his normal active self for weeks. I suppose I shouldn't worry too much and should be thankful that he just wants to see him in 6 months instead of a year for a follow up.

Thanks again,
Worry Wart Mom :P

Nancy
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Re: Post-treatment symptoms

Post by Nancy » Thu Jan 12, 2017 12:31 pm

hi

Sounds like he has a good cardiologist ! It is hard for mothers to stop worrying....I used to email my son's cardiologist frequently for
a long time :) But, it does get easier over time ! My son is now 22 yrs old and runs 10 miles a day, every day, all year round for
fitness and played very competitive sports all through his school years.

The biggest take away I get from your info...is the return to check in *6* months. If the cardiologist had ANY significant concerns,
he would have your son go back much sooner !

take care
Nancy

OliversMom
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Re: Post-treatment symptoms

Post by OliversMom » Sat Jan 14, 2017 10:18 pm

Thank you again, Nancy.

Is it normal for a child to go back to being less active? My son had started to be his usual hyper self which was really refreshing but the last few days he has just been colouring and watching tv. He still has red eyes and swollen lymph nodes, liver inflammation and his eczema is flaring for the first time in a couple years. He also has cradle cap or something. I never feel confident in what our doctors say so that makes it extra tough for me. He has a habit of holding his bowel movements and after 8 days, he finally went last night and I was hoping that he would be active again today but he wasn't. Is it normal for activity level to come and go?

I'm sorry for asking so many questions.

Jessica

Nancy
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Joined: Mon Apr 25, 2005 6:49 am

Re: Post-treatment symptoms

Post by Nancy » Sat Jan 14, 2017 10:50 pm

hi Jessica,

Please don't apologize ! Asking questions is very important :)

Correct me if I'm wrong, but I think your son was diagnosed on Dec 10th ?

If so, I wouldn't expect him to be back to his usual energy or style of playing until maybe the middle or end of February.
It seems to take kids about 8 to 10 weeks to really seem back to their own "normal"...and then it takes their worried mothers
another month to relax and feel better :)

My son was 7 yrs old when he had KD the end of August. He has an older brother and sister and was usually playing hard outside
as often as possible as well as playing on a soccer team. But, even though he went back to school one week after KD, he tired easily for the next several weeks and didn't really ask to go outside to play until 2 months later. And now he *runs* 10 miles a day every day all year round at age 22 !

PS. the red eyes are the last thing to go away. It is not a sign of inflammation !! It is a lingering photophobia and usually their
eyes will look more red as the day goes on.

best,
Nancy

OliversMom
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Re: Post-treatment symptoms

Post by OliversMom » Sat Jan 14, 2017 11:11 pm

Yes, he was treated on December 10th. I was just worried about the activity level since he was back to normal and then just woke up 3 days ago just as inactive as he was during the prediagnosis phase and a week or so after treatment. I went ahead and emailed his cardiologist and I'm really hoping that it's okay that I did that lol

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