The Kawasaki Disease Forum

http://smj.sma.org.sg/5007/5007cr2.pdf

In my opinion, children who had KD should have regular follow-up visits with a Pediatric Ophthalmologist. We are only begining to understand the effects of KD on the eye/vision.

KCLP

hi

interesting article...however, not sure I understand your suggestion of post-KD kids seeing a pediatric ophthalmologist..since in the conclusion
of the article, it states:

"There is no available report of a higher risk of coronary artery aneurysm in Kawasaki disease with retinoblastoma, or poorer
prognosis of retinoblastoma in the presence of Kawasaki disease. Thus, we believed that these two pathologies are
independent and manifested coincidentally "

Nancy

Nancy;
It is just like those aneuruism, some get 'em, some don't.
Eye sight might be just another thing to be aware of.
My daughter's eyesight is fine (KD at two years old)
My son's eyesight is not (KD at 3 months - and something continually for the next two years that I bet was inflammation and he was in the end worse off than she).

More for some kids is going on than just the intial proglong high fevers, pink rash, pink eyes, red blooded lips, and tongue, peeling, swelling--- is going on. For some, there is more long term stuff going on. It is time we wake up and start looking at this stuff.

Nancy,

"To the best of our knowledge, there is no association of KD and retinoblastoma." I agree, as cancer has not been a link in the KD cascade of events.

This child was referred to the ophthalmology clinic where the retinoblastoma was confirmed. A DX that could have been easily left as KD.

The combined discussions on common and rare ocular manifestations observed in KD is one reason I posted this article. Interesting and too often not discussed.

KCLP

KD is an autoimmune disease manifesting as a systemic vessel vasculitis effecting blood vessels, including vessels in the eyes.

Children affected w/KD develope red eyes because of non-suppurative (pus) conjunctivitis (inflamation of conjunctiva), iritis (inflamation of the iris), and bilateral anterior ureitis (intraocular inflammatory disorder).

http://emedicine.medscape.com/article/1197545-overview

*Discusses physical finding of how KD can effect the eye.

http://emedicine.medscape.com/article/1197545-followup

*How many kids were DX by an ophthalmologist?
**It is recommended kids have long-term cardiac follow-up. Why is follow-up not strongly urged with an ophthalmologist?

http://www.journalofpediatricophthalmol ... hing=23967

*"KD can be sight threatening."

http://autoimmunedisease.suite101.com/a ... fm/ureitis

*Strabismus is refered to by ophthalmologists as "Ureitis" an inflammatory eye condition. Ureitis also may accompany systemic autoimmune diseases such as KD.

OLDER ARTICLES:

http://pediatrics.aappublications.org/c ... l/101/6/e9

*Periorbital vasculitis complicating KS in an infant.

http://www.ophthal.org/ORJ/peds/vol2.shtml

*Consultation with a pediatric ophthalmologist is helpful for early recognition of the disease, especially in identifying "incomplete" cases.

KCLP

During the convalescent phase, our little guy complained of eye pain "in the black part" (pupil) that came along with severe headaches. We took him to a regular eye doctor just to make sure all was well with his sight, and it was. Thankfully, this compaint resolved after a couple of months, and I am reasonably sure it was part of KD. And it makes intuitive sense, too. The concern with KD is the inflammation. And in the heart, it can be quite serious. But wherever there are small-mid vessels, there are potential sites for KD issues.

Glad you posted this. We don't know. And that's the point. Navigation is where it all begins

Practicing Patience,

I would also believe that your son's eye pain and headaches were caused from small vessel inflamation from KD. Your instinct was right on target to get him seen by the ophthalmologist. Did his pediatrician suggest the examination or did you take the initiative? It is terrific news that he is feeling well as severe headaches can be a difficult DX challenge for kids and adults!

Wondering why the children on this forum who struggle with migranes after KD do not get a referal from their peds to see an ophthalmologist.

Dr's need to collaborate their care for our children who had Kd so the kids can get whole health check-ups.

Your instincts are on target, keep listening to them.

KCLP

We never did get to see an ophthalmologist, just our regular optometrist. It was my own initiative to get his eyes examined because the ped followup was several weeks out. The optometrist was genuine in his concern, though. He said it had been a loooong time since his training, that he remembered reading about KD, but he wanted to do some research to confirm his position. He phoned me later that night and his advice hadn't changed - that he was not qualified to do a slip lamp, but that's what he thought was needed. By the time we got to the ped for followup (where we would have asked for this referral), the eye pain had resolved, so no referral was necessary.

We still have fleeting headaches. I can't say they are migraines because I have never seen/had one before, but they seem to be pretty awful for him.

I think I smell a PhD topic brewing

Well, the article does state at the end that KD and the retinoblastoma were never reported together before and that they were unrelated. Vasculitis vs cancer -- different beasts.

However, there are some indications of problems for sure with KD and the eyes. We were referred to an opthamologist more than once during and after Paige's KD. Uvietis was suspected and they also found crystalline structures in her eyes from the steroids. Apparently that is common from steroids and they caused no problems and were not seen later.

On another note, we were also referred to a rheumatoid specialist, gastroenterologist, dermatologist and an ENT........all for different possible ramifications of her severe KD. There are a lot of different angles to KD and I've always worried about her other vessels......however, I still think the most common reported problems post KD reported by parents are joint pain and skin issues. We might see some overlapping of other issues with KD as coincidences and make more out of them than is really there, or there might be some obscure reason why there are a subset of weird symptoms for a few children. I've even had doctors say there might be different kinds of KD for all we know. I can tell you this much though---since 2003 there is a WHOLE lot more research and more articles than there was available then, thankfully! I also appreciate the discussions here.........much less closed off than the few radicals that represented the majority of opinions back then on the forum. I was literally shut out of discussions for suggesting KD was auto-immune and for saying I thought her vaccination may have triggered the KD.....be thankful that Joe has provided a forum where everyone is heard and no one is an expert.

Momcat,

Does Paige still see the Ophthalmologist yearly? Interesting about the crystalline structures in her eyes from the steroids. I am glad they caused no permanent damage.

So much KD related information is available on the "net" that it can get confusing. This forum has made it possible to consolidate the information into topics for those interested.

Agreed, thanks Joe for providing a place that fulfills a variety of support/information needs on an individual basis.

KCLP

http://www.ncbi.nlm.nih.gov/pubmed/20602325

2010 Extreme case. "...inflamation of both anterior and postierior segments does not seem to respond to KD specific treatment...." Wish we knew if this was a case of IKD, if the IVIG reduced the fever, what the outcome was, amoung other questions.


http://www.ncbi.nlm.nih.gov/pubmed/15206604

2004 "...highlights the posterior segment features of KD and positive correlation to angiographic findings...."

http://www.ncbi.nlm.nih.gov/pubmed/10653425

2000 KD Dx in adult patient.

KCLP