Tell me your lasting affects from KD

General discussion regarding Kawasaki disease
shan
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Re: Tell me your lasting affects from KD

Post by shan » Wed Apr 03, 2013 3:57 pm

My son had Kawasaki Disease when he was 4 a little over a year ago. He was treated with IVIG on day 10 and then aspirin. His main problem now is joint pain. I do not know if this is from the KD or not. He had mild joint pain in his knees before he got sick but after having KD the pain is much worse!!! Often he will wake up at night crying because the pain is so bad. Our doctor tells us that the pain is just growing pains and not related to KD but it seems like it is happening too often and it is just so painful for him, and it is significantly worse after the KD. There are days when his knees hurt so bad he doesn't want to walk. A heating pad seems to help more than anything else but nothing makes the pain go away completely, just time. He also seems to get sick a lot more now. He did just start school this year so that may be a part of him being sick a lot, but it seems like he always has a cough. He also has separation anxiety. He has always been a momma's boy but it is worse now, it might be from the scary hospital stay that made the separation anxiety worse. He also had high calcium levels for almost a year post KD. The doctor was never able to really tell me why this was, but it eventually went back to normal. He has been to the cardiologist 3 times post KD and thankfully his heart is fine. One thing the cardiologist told me was that eventually everyone gets some form of heart disease but people who have had KD will get heart disease 10 years earlier in their life then if they had never had KD.
Last edited by shan on Sat Jun 08, 2013 12:23 am, edited 2 times in total.

svallieu
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Re: Tell me your lasting affects from KD

Post by svallieu » Fri Jun 07, 2013 4:49 pm

Hello all!

New to the KD forum, and posting for my nephew, who is 11. He was diagnosed with KD at age three, with *all* of the classic symptoms. Spent two weeks in the hospital, ran a mild fever for several weeks afterwards, had skin peeling (hands and feet) occasionally in the 18 months to two years directly following diagnosis and very rarely since. He had two follow up EKGs at six months post KD and 18 months post KD, where no damage was indicated. He is doing well, as far as "official" KD goes, and was told at the second EKG there was no need for further follow up.

The problem is, he is still having issues. He has joint paint, sometime severe enough to affect how he walks and runs. This has been going on since KD, sometimes not bad at all, sometimes pretty bad. He is now getting into sports, and this is becoming more of an issue. He in the past year has complained of blurred vision that comes and goes. He often has an upset stomach, again this is something long term, WAY more often than his siblings or cousins, so probably not a "bug" going around.

Folks have mentioned emotional problems, and of my sister in laws five kids, he probably is the most easily upset, but no severe anger issues, and until proven otherwise I would say this is the least possible of post KD symptoms, for him specifically, as perhaps he is just a kid who wears his heart on his sleeve.

I posted a similar post over in the KD Stories forum, asking for advice about diet controlling these post KD symtoms. Has anyone used diet, joint supplements (or any other supplements, perhaps anti oxidant), or anything else, with any change/improvement in symptoms? Does daily anti-inflamatory OTC make a difference, and if so, do larger and larger doses over time become necessary to provide the same relief?

I appreciate any and all responses regarding your personal experience, and I think this is great to chart out these issues our kids are having.

Best regards,

Sarah

smloichle
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Re: Tell me your lasting affects from KD

Post by smloichle » Thu Jun 27, 2013 7:16 pm

I have posted a few times over the last few days. since KD dx my son has had alot of rashes, swelling lymphnodes, fevers, and stomache pains. I have been to alot of specialist who don't listen to me. Went to ID today and he told me it was eczema and stop trying to make him sick, like I would make these symptoms up, not to mention it is all documentd every flare up as well as pictures. I work at his pediatricians. I'm not crazy. I am however feeling like I am stuck between a rock and hard place. Saw Derm and Allergy which both said they didn't know what the rashes were. Hematology said not auto immune. He's 3 and miserable most nights because of the itching and non stop rashes. :(

french-mother
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Re: Tell me your lasting affects from KD

Post by french-mother » Thu Jul 18, 2013 4:46 am

my daugther (soon 4 years old) was diagnosed in last february.
we are luckky, she had no damage to her heart.
since KD, she has chronic migraines, chronic fatigue.
she is a very sensitive child and very irritable.
sometimes she is.... how to say... we don't reconise her, and few minutes later she's an angel...
she's more fragile, catches everythings (not before KD) and had delicate lungs.
since KD she don't groww up as before. pass to one cantimeter by month to one centimeter in 4 month !!!!!
our doctor (the one who diagnosed my daughter) say that all those trouble are certainly "second" effet to KD and it will pass or not :?
what is hard for me it's how to do with her irritability. my pedo-psychology studies don't help me, things are getting too much for me. i wonder if she (or me) need to see a specialist ?!!?
my son 5 years old is a lot trouble by all that. he is really near to his sister , and he had understand all the seriousness of the disease.....
i hope you understand my english, my husband is not here to correct me :wink:

amberque
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Re: Tell me your lasting affects from KD

Post by amberque » Fri Sep 06, 2013 10:32 am

Now the doctors doubt my daughter may have KD. I am scared. Now I am searching online. Is it possible all the lasting affects are related to the medical treatment of KD. I know in China there was an outbreak of SARS in 2003. After the treatment, the survivors have a lot of lasting affects, including joint pain,osteonecrosis of femoral...All these happened after half year the patients recovered. I wonder what medicine used in the treatment of KD may lead to the affects.

uno99
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Re: Tell me your lasting affects from KD

Post by uno99 » Sun Nov 24, 2013 11:38 am

Hello Everyone,

I'm almost 34 and was diagnosed with KD at 6. I was treated relatively quickly I think and no lesions or aneurysms were discovered.

I went on to live a somewhat unhealthy but happy life. I was quite overweight for the early part of my 20's (5'9 and 230lbs) At 26 I slimmed down significantly but continued to not eat exactly perfectly. I was also a light smoker for 10 years (2 packs a week). I'm now a ex smoker (6months) and I've cleaned up my diet and began eating and supplementing very heart healthy.

Recently I've been concerned about my heart health because I've noticed I have slight diagonal ear lobe creases on both my ears. This has become a cause of great worry for me since there have been a few recent studies that almost conclusively associate appearance of ear lobe creases with significant degree of atherosclerosis. (http://www.ncbi.nlm.nih.gov/m/pubmed/16738431/)

Of course I've been to my doctor several times recently. My BP is normal, my lipid panel resulted in VERY low LDL and decent HDL, and I've had a stress-echocardiogram which came back normal.

I'm curious to know if anyone in the 30+ crowd here has ELC?

geeju
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Re: Tell me your lasting affects from KD

Post by geeju » Mon Nov 25, 2013 8:21 am

My daughter had KD 12yr ago and suffers from ulcers in mouth and other more personal areas, has anyone else had this please, my GP is usless :?

Lili-So
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Re: Tell me your lasting affects from KD

Post by Lili-So » Tue Dec 03, 2013 10:03 pm

Hi people,
Both my older brother and me contracted the disease as babies. I'm now 26 years old, my brother is three years older. When I contracted the disease, we were the first case in Canada of siblings that aren't twins to have the disease, and at three years interval at that. Now, I know KD is harder on boys then girl, and I'm probably proof of that. My brother has a heart murmur, and he did two bell's palsy by the age of three. But, by the time I contracted KD, the treatments had vastly improved.

As far as lasting effects goes, both of us have a weaker immune system. Apparently it is very common. Joints pain were bad while growing up, but it has pretty much gone away in adulthood. To me the biggest repercussion is concentration problems. We both struggled with it in school, and Ritalin came into "popular culture" in my teens. Because of it we've both struggled with school past high school, still do to this day actually. My brother is back in school for accounting, and after a year he discussed his concentration issues with his physician. He is now taking medication when he needs to sit down and study for a while and it seems to work for him.

I'm putting a bigger emphases on the concentration issues here, because it is still being researched as a lasting effect of KD and since my other brother has never had this issue.

Lili-So

ForlilE
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Re: Tell me your lasting affects from KD

Post by ForlilE » Tue Jan 14, 2014 2:02 am

My son was diagnosed with KD on Dec 5, 2013, he had just turned two in October. So far I am definitely noticing a lot of eczema that has been persistent since his KD rash very first started. He does have random moments of extreme crankiness, but it's hard to say if that's from the KD or if it's because he's 2.

I think what you're doing is fantastic!

Dayu
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Re: Tell me your lasting affects from KD

Post by Dayu » Sat Jan 25, 2014 11:01 pm

Lili-So wrote:Hi people,
...
I'm putting a bigger emphases on the concentration issues here, because it is still being researched as a lasting effect of KD and since my other brother has never had this issue.

Lili-So
Thanks for posting this, I always thought my daughter, who has been treated with KD last year, concentration is because of her personality. I'm going to add to this observation that my daughter has issue with concentration too.

Other issues I noticed include occasionally stomach ache, and joint pain.

jonahmom2011
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Re: Tell me your lasting affects from KD

Post by jonahmom2011 » Mon Feb 03, 2014 8:28 pm

My son was diagnosed two weeks ago. So far our lasting affects are as follows:

1. Fatigue
2. Hair thinning and excessive hair knots - splits (did anyone else notice this?)
3. Dryer skin - he has eczema but his skin gets a lot dryer now on his arms and legs
4. Irritability - I think this may just be b/c he's a toddler

krissy
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Re: Tell me your lasting affects from KD

Post by krissy » Sun May 25, 2014 11:27 pm

I was diagnosed when I was 16 months old , I'm now 29 .
I have suffered a very poor immune system. From flu, pneumonia, strep , and even mono ( although tests were negative) swollen lymph notes and it goes on.
Digestive issues
Headaches
Irritability till this day never able to focus
Joint pains .....shoulders and knees

I'm new to the group and I am excited to know that I'm not the only one ........

gpotente
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Re: Tell me your lasting affects from KD

Post by gpotente » Wed Jun 18, 2014 8:29 pm

My son had KD when he was 6 yrs old on YR2010. He had rashes on his back, one of his eyes was red, he had continuous fever and cough. He had difficulty walking, thus my husband carried him to the hospital. When we got there, his fever continued to increase and when you touched him he was screaming in pain. His blood test result showed that his veins were swollen (his score was 200 while the normal range should be 5 to 20 only). 2DECho was performed and showed that the size of his left artery is abnormally larger around 5, normal size should be around 2 only. He was given IVIG, and large dose of aspirin.

The following day, he was back to normal as if nothing happened. He was walking, no fever and with a big appetite. However, the following day, all of the symptoms returned gradually. Another IVIG was given to him. He went well again, no fever occured after 24 hours thus were were released from the hospital. However, as soon as we came home, he was limping again, difficulty in walking and fever came back.

WE returned to the hospital as an out patient, he was gien steroids. Immediately he was well again. However after two days, he was limping, difficulty in walking and fever came back. We returned again to the hospital as out patient and another steroid was given. We were told that they can only provide steroids up to three times. Luckily, my son went well again. His fever never returned.

However, we noticed that he alwasy twist his feet particularly his toes. Every three months he had 2DECHO to check the size of his left artery. Todate, he is now turning 11 yrs old this July, results of his 2DECHO left artery size ranges from 4 to 5 and his pedia cardio says it is likely it will be that way. Thus doctor advised him to coninouosly take 2tablets of aspirin daily and 2DECHO on a yearly basis.

I still noticed that he keeps on twisting his toes and hands. He said he felt some numbness. Every time he has coughs and colds, his feet and hands are abnormally warm and the more he twists his feet and hands. His doctor prescribed him to take B Complex vitamins for a month.

Todate, he still takes 2 and half tablets of aspirin. We were advised to go to the doctor as soon as my son has fever or exposed to chicken pox so that the doctor will change his meds to persantin. My son still twitsts his feet and hands. He said he gets easily tired when standing for not so long time and when walking for not so long also. Whenever i report this to his doctor, B Complex was given to my son for a month. But still my son still feels the same.......

Lydiasmommy92
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Re: Tell me your lasting affects from KD

Post by Lydiasmommy92 » Tue Jun 24, 2014 8:44 am

My daughter was diagnosed with a typical kawasaki disease in march of this year. It is now almost July and almost twice a week she wakes up in the night crying because of joint pain. I told her ped and all he said was it was normal growing pains. Well I told him that's crap. Until kawasaki disease she never done that so im about certain that it was due to kawasakis. They still have not referred her to a specialist. Also since this she has had bad mood swings which im not sure of the cause.

JPNorth66
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Re: Tell me your lasting affects from KD

Post by JPNorth66 » Sun Jul 13, 2014 5:39 pm

bethroth wrote:Hi everyone,

I am trying to make a list of lasting non cardiac affects all of our children have suffered from since KD. If your child has had lingering problems please respond! I am going to make a chart with lingering issues and what seems to be the most reported ones. So if your child suffers from things like joint pain past the recovery period please let me know. As soon as I have a good response I am going to submit it to our Ped. and to the KD experts. Maybe if they see that there are enough of us out there that are dealing with these things on a daily basis they will take the time to look into it and we will no longer feel like we are nuts and our children just might not need to suffer any longer.
Thank you
Beth (Gregory KD 7 years ago this June 6th at age 5)
Hi Beth - are you still keeping track? (July 2014) My daughter continues to have peeling feet/toes. She was diagnosed and treated in 2005.

I also wonder if there is any indication that KD could be genetic. Thanks.

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