Long-term arthritic pain

General discussion regarding Kawasaki disease
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garnica4
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Long-term arthritic pain

Post by garnica4 » Mon Sep 10, 2012 10:50 pm

My daughter had KD @ 18 months of age. We have been told that she had one of the most severe cases documented in the year 1999. She spent a little over two weeks on the hospital, had two doses of IVIG, and one dose of Repro. She was originally diagnosed with a giant aneurysm in her left coronary artery of 13mm and one measuring 6mm in her right. She suffered from excrutiating pain in most of her joints (with an accompanying fever of 101-105 degrees for the next 5 months). Throughout the years, her left coronary aneurysm has regressed to around 7 mm and the one on her right is gone (yeah!). She has been on Coumadin and aspirin since her diagnosis. She is now 15 years old and leads a very full and normal life. Despite this, she has never completely been free of joint pain. We have been to orthos and a rheumatologist (about 5 years ago), but left without any answers as to what is causing the arthritic-like pain. Some days, the pain is so horrible that she cries. It is heartbreaking. We are going back to see another rheumatologist in hopes of another perspective from a new doctor. My question, is whether any other parents/patients have experienced anything like this? We attended a KD Foundation Symposium in San Diego a few years back and I recall a forum where several parents told similar stories. When Dr. Burns asked those parents to raise their hand if their children had cardiac involvement, they almost all put their hands up. I was struck by the commonality. If you have experienced it, please share....symptoms, diagnosis, treatment, etc... As you all know, there are so few concrete answers.... Thank you for your time!

bethroth
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Re: Long-term arthritic pain

Post by bethroth » Tue Sep 11, 2012 3:11 pm

My son had KD 10 years ago at age 5. Greg has suffered with horrible joint pain for the last 10 years. When he was diagnosed with KD he could not even walk due to the horrible pain in his legs. We have been to the same types of dr.s as you have. No one has ever been able to help him. He has tried different medications from Neurotin to Steroids to help deal with the pain. He plays Lacrosse for his high school and comes home every night rubbing icy hot on his legs. (We should buy stock in it with as much as he goes through) It seems to help some! Greg is lucky as he does not have cardiac involvement. Years ago the KD experts didn't even believe that the lingering joint pain was related to KD. Now they are seeing that there are many kids like ours that suffer daily. Does you daughter have any other noncardiac lingering issues. My son suffers from his hands and feet peeling at least once a month, red eyes out of the blue, fevers up to 101 that can last 1 hour to 1 day, severe migraine headaches, stomach problems and the list goes on. It is so hard as parents to see our children suffering and not be able to help them.
Take care
Beth

garnica4
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Re: Long-term arthritic pain

Post by garnica4 » Tue Sep 11, 2012 4:00 pm

Thanks for your response Beth. I agree with you on the "stock" thing. I have reusable cold packs in my freezer ready because we are always icing something with Paige. I will let you know what this "new" doctor says. We are going to Children's Hospital Los Angeles (where Paige sees Dr. Takahashi for cardiology), and we have heard they have a "new generation of rheumatologists". Hopefully the new generation will be open-minded and willing to work with us. Living in pain, ESPECIALLY for a child, is just so devastating.

Saundra
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Re: Long-term arthritic pain

Post by Saundra » Sun Jan 17, 2016 1:46 am

Did you ever get a diagnosis of the joint pain?

My son is 13 years post KD and was struck with an unexplained illness this fall. It started with a high fever, sore throat and rash. Then peeling, fatigue and joint pain that has been increasing for the past three months. The fatigue and joint pain is so bad that he can no longer attend school for the past two months. His thinking is very foggy and he has no short term memory so he can't process school work. Prior to this he was an A/B student.

We have seen countless specialists and revisited the KD clinic at Rady's in San Diego. Specialists so far include: infectious disease (2 doctors), rheumatology (2 doctors), allergy/immunology, neurology, psychiatry, cardiology, pain management and orthopedics coming up.

momofthree
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Re: Long-term arthritic pain

Post by momofthree » Fri Jan 29, 2016 1:55 pm

Saundra,

I wish you the best with your son. I hope you find answers soon. So many of those mysterious symptoms without answers. My son is just 1 year post KD (he was almost 20 months when diagnosed). He suffered several times a week for about 6 months post illness with what I consider joint pain. With his age, he couldn't tell me it was joint pain, but he would cry unconsolably rubbing his knees and legs until I would give him Tylenol to ease the pain. When he got a little older, he would tell me his "legs hurt". I thought we were in the clear as it had been about six months since his last episode. However, he recently started this again and had a few episodes this week. He also recently (about 2 weeks ago) had a virus with a high fever (103-104) which was his only symptom for 4 days. He has no swelling, redness, or warmth to these areas when he complains, so I feel it is related to the KD. Maybe this virus he had recently triggered something with the KD? My daughter has juvenile arthritis and her joints are always red, swollen, and warm with a flare. I get frustrated because Dr's tend to slough these types of symptoms off as if it's not related to the KD, even though there are many kids suffering with joint pain post KD.

Jvanessa
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Re: Long-term arthritic pain

Post by Jvanessa » Tue Mar 08, 2016 1:07 pm

My daughter was diagnosed with Kawasaki in July 2015 at the age of 3 years old. She was i kept in the hospital for over a week while they did a IVIG because her case with more serious she was kept in ICU. She has had no heart issue as it was caught on day 7 and all her echo test have come back good. However she has had joint pain since the age of 1 and a half and we couldn't find out why now that they diagnosed her with Kawasaki disease they say that the joint pains is due to Kawasaki. She is in so much pain at times that she will cry herself to sleep or not want to do to much activity so that her her joints don't hurt. I have had many visits with specialist pediatrics rheumatology orthopaedic and specialist.. They say if the joint pain is due to Kawasaki there's not much they can do and she will continue it have pain for the rest of her life.. They are going to test her for everything but I am wondering is there anything I can do to help her with the pain it's devastating.. We do physio once a week it was helping not so much now. Tylenol and Bengay.

Teng
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Re: Long-term arthritic pain

Post by Teng » Thu May 12, 2016 9:21 am

Every time I saw KD patients or KD parents talked about the patients' joint pain which may affect their whole life. I feel so heartbroken.

My daughter has severe leg and joint pain during the acute stage of KD and even after we came out of hospital. She could not even walk for her right leg. So her KD was wrongly treated as leg inflammation in the hospital (given x-ray and MRI and did not find any problem) and was finally diagnosed at the moment of discharge (with aneurysm formed). After we came out of the hospital, we continued to take aspirin but we also found an Asian doctor to prescribe some medicine herbs to help her for the overall recovery. I could tell the herbs worked well on her since my daughter quickly recovered to a better status after taking those medicine herbs. Her joint pain degraded and then disappear. Her aneurysm disappear in less than two months. Her face got more red color. Her energy recovered. I read a lot of KD research papers. It shows that the overall inflammation caused by Kd would sustain for long time even after the high fever. It is hard to only rely on one medicine like aspirin to adjust kids' body to a good status after the high fever and all kinds of medicine treatment (which exhausted the kid's nutrient/fluid/blood/airflow inside the body based on that Asian doctor). Good herb prescription would be very helpful to enhance overall immune system. But it is better to treat the join pain as early as possible right after KD. As it stays long, it may be more difficult to cure.

Just post some thoughts here. Good herb doctor is hard to find though. In West/east coast there is a big chance to find some reliable ones in oriental medicine clinics.

Nancy
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Re: Long-term arthritic pain

Post by Nancy » Thu May 12, 2016 1:37 pm

hi Teng

Transient joint pain is common with KD and normally resolves on its own without treatment within approx. two months.
Aspirin is not "the only medicine" treating KD, the major benefit is from the IVIG treatment. The aspirin is used simply
as a mild anticoagulant to help prevent blood clots.

Nancy

jay781
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Re: Long-term arthritic pain

Post by jay781 » Wed Sep 28, 2016 9:45 pm

Hi my daughter, now 3 1/2 was diagnosed when just 17 months old with KD and treated fortunately on the 5th day. She had terrible arthritis pain for 3 months after diagnosis in her wrists, knees and ankles to the point where she could not walk or feed herself for a couple of hours after waking and was very limited in her movements which was so unusual for her as she is a child who does not sit still. She had no cardiac issues and was discharged from all follow up last year. But over the past couple of months she complains that joints hurt all over her. For the last 3 weeks she has complained that her left wrist has been hurting and I have put it down to growing pains as there were not other obvious symptoms or trauma to cause it.

That was until this morning when she woke, her wrist and hand was very swollen and warm and was guarding it. We have been to the doctor and had an x-ray which didn't show anything significant and been to have bloods as the GP is suspecting possible arthritis. Needless to say I have jumped on google and came across this site. I am looking for anyone who has had a similar experience so I am armed with info when we see our paediatrician soon. When you google KD and juvenile arthritis nothing comes up except for the initial arthritis symptoms linked to the inflammation stage of the disease. Is it possible to have residual arthritis suddenly flare up literally 2 years to the day after diagnosis???

Thanks in advance for any advice
:)

Jpp
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Re: Long-term arthritic pain

Post by Jpp » Wed Dec 21, 2016 7:50 am

Jvsnessa- did things ever get better? What treatment worked for you?


quote="Jvanessa"]My daughter was diagnosed with Kawasaki in July 2015 at the age of 3 years old. She was i kept in the hospital for over a week while they did a IVIG because her case with more serious she was kept in ICU. She has had no heart issue as it was caught on day 7 and all her echo test have come back good. However she has had joint pain since the age of 1 and a half and we couldn't find out why now that they diagnosed her with Kawasaki disease they say that the joint pains is due to Kawasaki. She is in so much pain at times that she will cry herself to sleep or not want to do to much activity so that her her joints don't hurt. I have had many visits with specialist pediatrics rheumatology orthopaedic and specialist.. They say if the joint pain is due to Kawasaki there's not much they can do and she will continue it have pain for the rest of her life.. They are going to test her for everything but I am wondering is there anything I can do to help her

Sbohlsen
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Re: Long-term arthritic pain

Post by Sbohlsen » Tue Jul 11, 2017 12:48 pm

My daughter was 7 when she was diagnosed with Kawasaki Disease. She was diagnosed and treated on day 6 after three ER visits and me thinking that, if I didn't try one more doctor, that my little girl was going to die in my arms. She was finally admitted to Riley Hospital for Children, thank God. Wonderful, wonderful hospital and staff.

Although most children only receive 1 IVIG treatment, she required 2 before her symptoms began to go away. She is now 14, and we call her our health problem child. She is always complaining of joint pain, she swells very easily and often (at different periods, her wrists or ankles seem to be in a constant swollen state), she has headaches, her heart races when she exercises (although there was no evidence of heart problems immediately after KD or 6 years later when we began to worry again), she can sleep forever (although I don't know how much is teen hormones, etc. vs. other things). Her bones/joints pop and creak a lot. Rarely, she will also run a low grade fever.

I really do think she has arthritis, and I hate the thought of a future with it for her. But, she leads a relatively normal life otherwise, and we are just glad to still have her here with us.

Helping my girl fight through KD was one of the scariest times of my life. I hope that the cause is found and that the disease is better understood soon.

LadyJ
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Re: Long-term arthritic pain

Post by LadyJ » Tue Sep 05, 2017 12:01 pm

Hello,

I am a 27 year old native of Nashville, TN. I am a post KD patient. I was diagnosed with KD when I was an infant. I received the IVIG treatment just in time. To my knowledge, I received 5 treatments of IVIG and remained in and out of the Hospital until I was 3 years old. Vanderbilt Hospital helped a lot in my recovery as well as Dr. Patricia Robinson for catching the symptoms and diagnosing them quickly. I was pale in the face, red eyes, dark rings under my eyes, peeling skin, Fever of 103, not eating, heart issues, and very close to dying.

I have since had issues with asthma, arthritis, frail bones, allergies, and many of the other symptoms you all have described in your posts.
I have recently been having issues with my heart and continuous issues with my joints. I have been diagnosed with arthritis in my feet and knees. All arthritis is severe. I unfortunately have been dealing with the arthritis for years. I was unable to participate in many sports growing up due to the pain and surgeries held because of it. I am currently in braces to help my knee and unable to play my instruments of which I have played for over 17 years.

As I have read your discussions, I know truly believe that my arthritis is linked to the KD. There was even a doctor from the St.Thomas Hospital of Nashville that recommended I look into getting my heart checked because of me being a previous KD patient. He explained that it can be a link between the edema, joint issues, and sickness I was having recently.

I have lived a normal life, but with limitations.

Not sure if this information will help you, but I did feel the need to post a response.

Thanks!

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