Saturday, October 8, 2011

Kawasaki Disease: A Parent's Experience.

No,its not a disease related to the Motorsport bike.

Kawasaki disease is an auto immune disease where the body develops antibodies and attack blood vessels,and causing Vasculitis,or inflammation of blood vessels,it usually develop in children below age of 5 and most commonly infants and toddlers...the is a racial predominance in Asians,but it does occur to different races and ethnicities.

Signs and symptoms starts with a fever that doesn't respond to medication,and stays for over 5-7 days,also,the child lips and oral cavity becomes reddish and its known as strawberry tongue..the skin might show red patches that resemble rash,and a very distinguishing symptom is the bloodshot red eyes,they eyes look so red as if its a horror movie.

If the disease left untreated over 7-10 days,the inflammation will involve the coronary arteries that supply the heart,and develop aneurisms...and result in myocardial infarction and death.

The tricky part about this disease that its diagnosis is purely clinical and highly,if not solely depends on the pediatricians knowledge and experience with the disease,its frequently misdiagnosed,and always dismissed as throat infections and children are given antibiotics,which of course doesn't work.

Its treated by administration of IVIG "Intravenous immunoglobulins" which tricks and attract the circulating antibodies and sort of "bond to them" and sort of "neutralize them"

If this treatment is established in a timely manner the kid most likely will recover completely,and the heart should remain intact,if it was established at a later stage and after cardiac involvement,the child will recover and should remain under continuous observation for heart changes from the aneurisms,treatment also involve anti coagulants like aspiring in low doses daily for a period of up to six months,depending on how much damage there was,giving aspirin is controversial but this disease is one of very few indications to give what other wise considered a drug not recommended for kids.

It was the love of god that got us to treat our daughter on time,being in makkah at the time we went to a pediatrician who diagnosed it as a typical throat infection,i and told us the eye is reddish from lack of sleep,gave her antibiotics and that was that..thanks to her mother who was not convinced,and her pediatrician back in US who was very vigilant in giving antibiotics,we decided to take a second opinion, so i simply put a Facebook status to help me find a good pediatrician,and one recommended her Pediatrician professor in Jeddah,and we went to him.

Imagine your self in my place,he was very warm and welcoming,asked us how did we get to know his practice..then asked whats up.
as i started telling him,and in the middle of me speaking,he suddenly stops me and ask me another question,and as soon as i say my answer he cuts up my answer and ask me another...i was fuming..but carried on,in the again he asked us who referred us to him.
then he asked us,whats our financial status? i told him we are jobs yet...he immediately referred us to the teaching hospital he teaches at and gave us immediate admission papers,and broke the story down to us.

He told us he immediately knew her illness the second he looked at her,and his repetitive questions were to double confirm it,he was worried and rushing to send her to the hospital and establish the treatment,he told us you guys must be really good people,as he did his subspecialty training in this specific field and he have extensive experience in it,and he thought we were referred to him specifically because of that from another pediatrician,and he was stunned that it was pure coincidence.

We went to the teaching hospital,a friend of mine helped us in the admission,who was an intern there and i am very thankful to her,the treatment was established immediately,and she was admitted for 24 hours,the fever went down,almost immediately as the treatment started.

Now this is where i believe it was divine intervention that got us through,her treatment at the teaching was absolutely free,it didn't cause us a dime,and if we were sent to a private hospital it would have costed us 80'000 Saudi Riyals,yup,80 grand!
the IVIG was giving in 8 fluid bags,each cost about 10'000 riyals,and IVIG treatment is known to be extremely expensive world wide,i tell you,its love of god.

But it didn't stop there,the same day,after she was cleared and discharged,we went and dined in our favorite place,and went back home,my daughter and her mommy were sleep deprived and dead tired,they laid on the bed,mommy was hugging her daughter to sleep before she put her in her crib..but both did i.

Suddenly,we woke up by a loud cacophony of a glass bowl shatter,and a scream who i recognized to be my daughter,in a split second i woke up,turned the light and went to her side of the bed,what i saw was horrifying.

My daughter was on the floor,surrounded by a pool of blood and tiny million little pieces of glass fragments from the bowl we used for cold compressions last nigh,her face was covered in blood from a wound in her forehead,we cleaned her as carefully as we can,and took off immediately back to jeddah once again at 3 am in the morning.

Luckily X-rays were clear,she had superficial wounds and a deep cut in her nose,but fully recoverable,no fragments were forced into the nostril,Hamdulillah, We however, were traumatized by the whole experience,it took us a full month to relax and sooth out the tension that built up,i remember waking up every two hours to check on her fever and everything.

We just got her ECG and ultrasound done last week and she was cleared and her heart is intact,we stopped aspirin for good,and a routine check up is planned every six months.

As a parent, i learned that you can never be careful enough,and no matter how careful you are,accidents will still happen, and all you can be is a caring parent,don't look at what happened,and think of what you can do ahead,it was a horrible experience,i am glad it ended,and i pray to god no one,no matter who they are,would go through it.

This was supposed to be a short comment that blew out of proportions O.O i took the liberty of posting it as a blogpost in my forsaken blog. i shall say thank you to Under The Abaya,as she who got me to write this post by asking about it, which by the way,is the second time i write this post,because the first time i wrote it was deleted by mistake!


Chiara said...

Wow! It's been a long time since I thought about Kawasaki's Disease. How wonderful that your daughter made a full recovery! An ill child is such a worry, especially when you don't have a trusted pediatrician nearby. Luckily your daughter has vigilant parents who trusted Mom's instincts and Dad's intuition.

One of my psychotherapy patients, age 20, was suffering depression. Among the stressors was the death of his sister, age 25, in a Canadian hospital of an unrecognized sickle cell crisis. They were of African origin but I suspect the ER staff at the major hospital in a major northern city didn't have a lot of experience with sickle cell disease and didn't twig until too late. Sad and disturbing.

I hope your little one has no traces of her bowl misadventure, and is as beautiful as ever.

Thanks for sharing. Keep blogging and they will come! :D

Laylah said...

Amazing story..
You were lucky to be refered to him, or as you say it was divine intervention, for sure.
I cant imagine how it would feel if my daughter had something like this happen. Just a horrible horrible experience you all had.
BUT God tests us and things happen for a reason right?
Maybe this was meant to happen to make you closer as a family, to strengthen your bond..

I have to admit I've never heard of this before, but I never worked with peds that much. I appreciate the info. Thanks, I will share this!

Laylah said...

In regards to your question, how come ppl dont comment..
well it could be a multitude of things.
For me, I came to your blogs home page and from there the comments section is not visible at all, so one has to click on the post first. Maybe you could have it visible so its easier for ppl to find it. For a while I was thinking have you disabled comments..
Then your font size is really tiny man. I need to get some Panadol after a while, just kidding :)Maybe I just have extremely poor eyesight?Also the white on black is difficult for me to read. Maybe theres something wrong with my eyes.But it could also bother some other ppl too and they dont finish reading. just a thought!
When I took the word verification off my blog that increased the comments, I think. Because sometimes what ppl do is they write their comment, then click send and thinking it was submitted and just click theirselves away before noticing they needed to verify it.

Hope you didnt find my comment offensive or anything, I just wanted to help out :)

Laylah said...

I just noticed the comments icon is behind the other icons on the side bar I guess I really do need glasses LOL

Dentographer said...

Thank you Chiara,it seems like hospitals mishaps is something that will long live before it can be completely eliminated,or some how research brings up a way to minimizes human error :p

Dentographer said...

Laylah,thank you for your comments,it was about time for me to change the theme anyways,thank you so much for your input and i hope you find this to be easier than the previous one,and welcome to my blog =D

Hanan Al Gamdi said...

Oh LORD, just reading that was a real horror, man.
الحمدلله على سلامتها

Dentographer said...

Am glad it passed,thanks a lot for coming by Hanan!

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