VARIOUS LONG TERM EFFECTS?

Personal stories of individuals and families affected by Kawasaki disease
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danielle829
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Joined: Sun Jun 14, 2015 1:13 pm

VARIOUS LONG TERM EFFECTS?

Post by danielle829 » Sun Jun 14, 2015 1:36 pm

I have been looking for an answer to questions about lasting effects of KD.

My son, Hunter, was diagnosed with KD in 2001 at the age of 2 1/2. Originally, I took him to the doctor, and he was treated for Scarlet Fever. My doctor said if he didn't show improvement in 24 hours to call back.

Within 24 hours, my son had every classic symptom of KD. Fortunately, our doctor had seen one case before, and suspected KD. When he received the diagnosis, we had to transfer our son to Philadelphia by ambulance, since our local hospital was not equipped to provide IVIG Therapy.

He was caught early, had severe symptoms, and was treated with IVIG Therapy. He slowly recovered, with a period of aspirin therapy after he was released. After annual cardio exams, he was given a clean bill of health at the age of 10.

Hunter is now nearing 17. (Born on the Fourth of July) He has suffered from a compromised immune system for most of his teens. In September of 2014, he contracted a double strain of mono, that had him hospitalized for 10 days, and out of school for 2 months. It was the most severe case the local hospital had ever seen. He was on a morphine drip because of the pain from his inflamed organs.

He has suffered with numerous attacks of bronchitis. Migraines, joint pain, chest pain, IBS...all common for him.

He also has extensive dental problems, and is treated at the University of Pennsylvania, he is such an unusual case. He has taken care of his teeth; and no matter how meticulous, the problems never stop.

I'm at my wit's end. My older son (20), has been healthy as a horse. I believe KD had lasting effects, but cannot find any real information.

Just looking for help or direction.

Thanks,
Danielle

Nancy
KD Forum Leader
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Joined: Mon Apr 25, 2005 6:49 am

Re: VARIOUS LONG TERM EFFECTS?

Post by Nancy » Sun Jun 14, 2015 7:44 pm

hi

The medical literature really only reports cardiac complications from KD. Anything else in anecdotal from other parents.
My son also had KD long ago, in 2002. He's now 20 years old and has only had one "sick" visit since 2002, rarely ever gets even a cold.
He runs nine miles a day all year round for fitness and played competitive sports all through high school. My daughter, who did NOT have KD, catches everything and is sick twice as long as anyone who is sick. My point, individual responses to illness vary from person to person, even among siblings and may have nothing to do with a history of KD

best
nancy

Ilana.shero
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Posts: 4
Joined: Sat Jul 09, 2016 6:41 pm

Re: VARIOUS LONG TERM EFFECTS?

Post by Ilana.shero » Sat Jul 09, 2016 7:13 pm

Im 37 yrs old and barely survived KD as an infant. I didnt have any noticeable issues afterward until i was about 25 yrs old. Then it all started has come and gone (in and out of remission) since. Yes, migraines, joint pain, narcolepsy, hair loss, skin pigmentation issues, concentration problems/irritability , elevated liver enzymes, kidney infections and gull bladder stones (gull bladder removed at age 31), yellow blood shot eyes, weight loss... The migraines are the worst, they're worse than natural child birth! Sometimes these symptoms last a couple months, 6 months or at the longest (so far) is 2 yrs. But ive also gone 2 yrs without any symptoms at all! I dont feel like the same person it exhausting and frustrating but im grateful it isn't anything terminal. I wish we knew more.
Science/Dr's still don't know very much about auto immune problems, unfortunately. My daughter almost died from something more rare- Transverse Myalitis, when she was 3 yrs old. She ended up temporarily paralyzed, but is now 9 yrs old and ok. We don't know if they have anything to do with one another but maybe someone at some point might have a similar experience and we would have a better idea (as my daughter may have concerns about having children later in life). I never guessed my symptoms were related when they began but ran out of possible answers until i read some KD stories and showed them to my dr. I would have zero peace of mind if it weren't for everyone who shares, so THANK YOU! I appreciate everyone's in put, especially as a worrisome mother.

Ilana.shero
New Member
Posts: 4
Joined: Sat Jul 09, 2016 6:41 pm

Re: VARIOUS LONG TERM EFFECTS?

Post by Ilana.shero » Sat Jul 09, 2016 7:14 pm

Im 37 yrs old and barely survived KD as an infant. I didnt have any noticeable issues afterward until i was about 25 yrs old. Then it all started has come and gone (in and out of remission) since. Yes, migraines, joint pain, narcolepsy, hair loss, skin pigmentation issues, concentration problems/irritability , elevated liver enzymes, kidney infections and gull bladder stones (gull bladder removed at age 31), yellow blood shot eyes, weight loss... The migraines are the worst, they're worse than natural child birth! Sometimes these symptoms last a couple months, 6 months or at the longest (so far) is 2 yrs. But ive also gone 2 yrs without any symptoms at all! I dont feel like the same person it exhausting and frustrating but im grateful it isn't anything terminal. I wish we knew more.
Science/Dr's still don't know very much about auto immune problems, unfortunately. My daughter almost died from something more rare- Transverse Myalitis, when she was 3 yrs old. She ended up temporarily paralyzed, but is now 9 yrs old and ok. We don't know if they have anything to do with one another but maybe someone at some point might have a similar experience and we would have a better idea (as my daughter may have concerns about having children later in life). I never guessed my symptoms were related when they began but ran out of possible answers until i read some KD stories and showed them to my dr. I would have zero peace of mind if it weren't for everyone who shares, so THANK YOU! I appreciate everyone's in put, especially as a worrisome mother.

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