My son passed away

General discussion regarding Kawasaki disease
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My son passed away

Post by TriciaElMaraki »

Good evening,
my 7 year old son passed away on Monday 18th September.
He was diagnosed with Kawasaki disease in June.

Bloated tummy from time to time doctors said allergic to things like ketchup, mayo etc

Start-mid June:
swollen face doctors thought it was a very bad sunburn reaction that was atypical.
Rashes that looked like sunburn but strangely we're found on areas that were covered by his shirt and shorts
Fever at 39-40 degrees Celsius over a week
Random bruises especially on his thighs
Red spots/marks in the eyes the white part of the eyes
Peeled broken lips
Red tongue
Mouth ulcer

He always bruised easily and hands/fingers and feet skin peel often.
Bruised often as well but don't every boy of this age bruise often?

He changed from being very lively and cheeky boy to from time to time very zombie like to always tired and bored / not interested.

16th June blood test:
Creatine 0.6 mg/dl
Haemoglobin 8.2 g/dl
Hematocrit 31.6 %
M.C.H.C 26.0%
MCH 21 u-gems of hb
Platelets 410 x (10x10x10) / cu mm
ESR 70

28th June blood test:
HGB 10.6 g/dl
PLT 569 K/UL
ESR 35 mm/hr
LDH 764 IU/L
Yeast cells +++ found in stools

Liver: 14cm

Mid August bad peeling of feet after sea coral incident

End of August he had a cold / borderline flu

Start of September: heavy migraine - blurred vision followed by bad headache, nauseous - upset stomach causing to throw up, feeling weak. On and off for 4 days

Last week
no migraine except one day he complained of headache.
He looked like he had a cold starting flu. Both my husband and I had the flu on and off since mid August.
Looked tired
But no loss of appetite

Sunday night tummy ache and watery vomit 3 times between 4pm n 3am

Monday morning:
He said he was fine but looked tired so told him to stay home.
He looked dehydrated but did not think it could b only from 3 throwing up session over 1 night. Kept on asking for water we gave him not too much in a go
He had a shower he looked fine
He complained of left arm painful, he said he was tired,
He said I love you papa, I love u maman,
Then he threw up through the nose and mouth - dark watery vomit
Tummy bloated
Eyes rolled
Low faint seizure like movement

Weak pulse

CPR waiting for ambulance
Dead on arrival of ambulance
Pronounce dead at hospital

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Re: My son passed away

Post by Nancy »

There are no words for the loss of a child...but, know that my mother's heart goes out to you in your tragedy.
I cannot imagine what you are going through...but, hope that memories of his life with you live in your heart
forever and somehow sustain you in your grief

with deepest sympathy,

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Re: My son passed away

Post by TriciaElMaraki »

Thank you.
I want to know more on the Kawasaki disease.
My son's test results showed a back to normal status start of July so we never thought it was Kawasaki plus we were not well informed on Kawasaki ... didn't know it could lead to death ...

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Re: My son passed away

Post by Teplongues19 »

OMG, i just feel for you, sending you all the support and love. I can't even imagine how hard is to loose your child. The only thing i really hope is that he is in a better place and that now he feel good! :( Kids don't deserve to feel pain and to pass away like this. My friend is having the same problem, with her kid and she is spending a lot of drug coupons trying to do something for this. I can't imagine how hard is this! :( Sending you the best thoughts. Stay strong for your baby ! <3
Last edited by Teplongues19 on Mon Oct 30, 2017 12:51 pm, edited 1 time in total.

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Re: My son passed away

Post by TriciaElMaraki »

Thank you.
Any information that can help better understand what to expect from autopsy report please can you share?
Thank you

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Re: My son passed away

Post by mcoss7 »

My deepest apologies for your loss, there are no words, my heart aches for you.
What is deadly about Kawasaki Disease is how it attacks the blood vessels and the coronary vessels in the heart, did he have all of his follow up Echocardiograms, and did they put him on aspirin regime for awhile? Those are the most important factors regarding kawasaki. Those would be my questions if he had a KD diagnosis. Goodluck, and again my deepest condolences.

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Re: My son passed away

Post by Utahmom »

I am so sorry for your great loss.
Our little guy is 6 1/2 years old.
They midiagnosed our son, so he was not able to get treatment.
We are about 25 days + out from fever.
We also ended up with croup yesterday.
Our little guy now has some leg pain from his knee down, which is new.
I will not lie, we are scared. The doctor here had nothing to tell us, nobadvice, no instruction, just nothing.
I send our deepest sympathy to you and your family.

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Re: My son passed away

Post by joycewiles »

How sad for you and your family. My grandson has been diagnosed with KD after the fact and now has heart disease. He is in his 2nd week and is being treated. My question for you is did your son ever have treatment for DK?? or was it diagnosed afterward. I didn't see any detail of treatment. I'm very concerned for my grandson and greatly appreciate your sharing with us. Thank you so much!

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