Long term joint pain

Personal stories of individuals and families affected by Kawasaki disease
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twitte
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Long term joint pain

Post by twitte » Mon Aug 10, 2009 11:22 am

Hello, My daughter had Kawaski's Disease when she was almost 5 years old. They mis-diagnosed her at one hospital so it was about day 10 before she received treatment. She is now 14 and continues to have joint pain. She loves to play soccer and this year is not enthuased at all because of the pain. Can anyone tell me if they have had the same experience? Can joints be affected many years after having KD? This has been going on for years and after many doctor visits we had not had any luck finding out what is causing the pain. Thanks, Tonya

KCLP
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Re: Long term joint pain

Post by KCLP » Mon Aug 10, 2009 6:18 pm

Hi,

Many children post Kd have complained of joint pain. The pain is not traditionally accepted or recognized by the medical community.

I can calculate that by your daughter's age, she is probably getting ready to play in high school. The conditioning routines can be brutal for soccer as I am sure you (and she) are aware.

I have to ask, did you daughter have any heart envolvemant after KD?

Best of luck.
Last edited by KCLP on Wed Mar 26, 2014 4:31 pm, edited 2 times in total.

Momcat
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Re: Long term joint pain

Post by Momcat » Tue Aug 11, 2009 8:11 am

Yes, our daughter is 12 now and has joint pain occasionally, it seems to come out of nowhere, although it is accentuated when she does something physically demanding, She also has a hip that popped out of place once and it still bothers her at times. She does have mild scoliosis. We just take it as what is normal for her.....since KD.

twitte
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Re: Long term joint pain

Post by twitte » Tue Aug 11, 2009 8:22 am

My daughter did not have any heart envolvment. When they did the post echocardium it came back clear. Like I stated, she was at or beyond day 10 since the small hospital she was in did not refer her somewhere else when they could not figure it out. They sent her home after a week and said it was probably viral and nothing that would kill her, I took her to Mayo and they knew what it was in only about 5 minutes after asking questions some questions. She had a incredible amount of joint pain while she had KD, could not even walk when they sent her home.

I was wondering about having her take advil, she has an appointment on Friday and we will see what the doctor recommends.

It is strange that you mention allergies, she has been miserable with her allergies this year, we have had a hard time finding something that works.

Jessica played baseball for several years, only girl in the boys league, did quite well. School regualations that she could not play after 6th grade. Yes, she will be a freshman this year but has played Junior Varsity and Varsity soccer for the last 2 years. So, I was quite surprised when she did not show any excitement to get started practicing this summer. It is her knees that are mostly affected.

I am glad that you responded, I was just not sure if it could be related to having had KD. Not much information out there to find any answers about this.

bbmom
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Re: Long term joint pain

Post by bbmom » Thu Nov 05, 2009 9:44 pm

Hey! I am so glad to see your post! My daughter was diagnosed with atypical KD when she was 2 years old. For the past year we have been suffering from joint pain and low grade fevers. We have been to see many specialists and nothing. Are there any other symptoms???

liquidambar
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Re: Long term joint pain

Post by liquidambar » Fri Nov 06, 2009 3:11 am

Daughter has always been stiff in the morning.
Wrist was always her main complaint.
Always hurting them.
Now that she is older and grown it is her knees

hwinch08
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Re: Long term joint pain

Post by hwinch08 » Wed Mar 31, 2010 1:38 am

I am 24, and I had it when I was about 6wks old. I've had shoulder, knee and back problems for as long as I can remember-and lately my wrist and elbows have been becoming increasingly worseto the point where I cannot bend my elbows or put pressure on my wrists. Nothing I do seems to help, even advil and aleve no longer help with the pain. It wasnt until this evening that I even thought about kd having anything to do with it. Now I am starting to wonder if maybe kd is still the cause of my pain even though its been 24 yrs...

jerse0440
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Re: Long term joint pain

Post by jerse0440 » Wed Mar 31, 2010 7:24 am

My son developed juvenile psoriatic arthritis about 6 weeks after the KD. He had joint pain mostly in his knees and heels and then swelling developed. After 6 weeks of that he was seen by a pediatric rheumatologist who concluded that any swelling that lasts for more than a couple of months is due to a juvenile arthritis. She did not know if it was rheumatoid or psoriatic as it sometimes can take a decade for other symptoms to manifest to make the distinction, however treatment is basically the same for either and that is to control inflammation. As time went on he did develop some grayish thick skin on his elbows withing the year and that made the conclusion clear, it was psoriasis on the elbows and thus the arthritis was the type that can come from psoriasis. There are some studies linking KD and psoriasis. Thankfully, by the grace of God he is doing much better after about a year and currently has little to no pain. He does have trouble with low ferritin and low vitamin D. New research is showing that kids should have Vit. D levels up above 40-50 and low levels can attribute to joint pain (per the rheumatologist) and low ferritin (should also be in 40-50 range) can attribute to fatigue.

liquidambar
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Re: Long term joint pain

Post by liquidambar » Wed Mar 31, 2010 1:45 pm

Jerse;
A lot of these kids are also showing up to have low L-carnitine levels too.

500 mg a day is what my family requires.

pjohnson07
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Re: Long term joint pain

Post by pjohnson07 » Wed Apr 07, 2010 7:30 pm

My son was just shy of 2 when diagnosed. He is now 10 1/2 and having lots of things happening. Joint pain (or what we've always just said as growing pains) have been very prevalent and have always been dismissed as normal growing pains for a young boy. He just recently had sudden onset of blurred vision and after a few weeks it cleared up. He has had so many tests ran recently - MRI, diabetes check, vision tests of all kinds, and now a follow up with a Neurologist. He was taking Singulair regularly but they had him stop that when his vision went all blurry. I always wonder in the back of my mind how much if any of this is related to his KD.

shakesha
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Re: Long term joint pain

Post by shakesha » Sat Jul 27, 2013 11:07 am

My daughter was diagnosed with kd when she was3 years old she is 4 now and has had joint pain since when we left the hospital she couldnt walk when she did she would drag one leg the doctors said it was due to swollen lymps she is still in pain they tell me not to give her asprin what am i to do? This has been a problem every since she got kd after being checked for growing pains and discovered she had not grown a inch since the last visit i feel the doctors are in total denial about the after affects of this disease and im frustrated i dont know who to go to or what to do can some one give me advice?

cmorey81
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Re: Long term joint pain

Post by cmorey81 » Sun Jul 28, 2013 8:34 pm

Do you give her zinc? I'm not sure if it helped my joints or my muscles but when I was little my mom made me take it religiously.

Reeseleena
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Re: Long term joint pain

Post by Reeseleena » Sat Jan 07, 2017 1:28 pm

My son is 4yrs old and just got diagnosed with KDand was hospitalized two weeks ago he did the immunoglobulin transfusion and is still on a high dose of aspirin therapy but has been now complaining about joint pain in his knees and ankles since then..was wondering if it was all due to the KD

Nancy
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Re: Long term joint pain

Post by Nancy » Mon Jan 09, 2017 8:39 am

hi

Transient joint pain occurs in many children with KD. It resolves without treatment, usually within 4-6 weeks.

take care,
Nancy

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