Can you get treatment after late diagnosis

General discussion regarding Kawasaki disease
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Utahmom
10+ Posts
Posts: 11
Joined: Fri Feb 09, 2018 10:53 pm

Can you get treatment after late diagnosis

Post by Utahmom » Sat Feb 10, 2018 12:11 pm

Our 6 year old son is 21 days out KD.

1st Day -
Started with extreme lethargy. Developed high fever, sore throat, swollen lymph nodes, red throat, swollen tonsils, white coated tongue (to start), extreme lethargy, runny nose, cough, no appetite, stomach pain, non stop vomiting.
Hands felt very dry, unusually dry when I changed his clothes.

2nd Day AM -
We took him to the Dr. with high fever, sore throat, swollen lymph nodes, red throat, white coated tongue (to start), extreme lethargy, runny nose, cough, no appetite, stomach pain, non stop vomiting.
Dr. thought strep.
Test for strep and flu negative.
Fever was 102.
She gave us amoxicillin and told us to administer anyway as she thought it was strep.

2nd Day 7 pm-
Took to Instacare all symptoms still present
high fever, sore throat, swollen lymph nodes, red throat, white coated tongue (to start), extreme lethargy, runny nose, cough, no appetite, stomach pain, non stop vomiting.
Son much worse, NEW SYMPTOMrash all over his body thought allergic reaction.
all symptoms still present
fever now 105.2,
limp as a rag doll, is not walking. husband carrying him.
Dr. looked as if he was scared to be in the room with our son, very odd.
He did strep and flu tests again. Negative.
Dr. gave us a prescription medicine to help with vomiting.
Sent home. Vomiting ceased with administration of drug.

Day 3 -
Child the same, all symptoms still present with NEW SYMPTOM of a very red,strawberry looking tongue,
fever still up,
rash all over his body, even the palms of his hands, soles of feet and his groin.
Entire body ablaze like a sunburn. Very Itchy skin.
Vomiting ceased and stomach pain gone. All other symptoms still present.
NEW Symptom - his whites of his eyes became pink/red

Day 4-
No change. saw Dr. again, they don't know what is wrong.
We ask for blood test, they do not think we need it.
Say it is virus.
Keep giving Ibuprofen and acetaminophen alternating every 3 hours. No improvement.
All symptoms still present except vomiting and stomach pain.
NEW Symptom - penis started to lightly flake and peel
NEW Symptom - his lips are extremely chapped and dry .

Day 5 -
No change. told to keep hydrated, keep doing OTC fever reducers.
Fever between 101.5 and 102
Rash dissipating but very Itchy.

Day 6 -
All symptoms still present but child is hungry and wants to eat.
Fever down to 100. Seems to be much better with a lower fever.
Fever broke to 98.9 on Day 6 afternoon.
NEW SYMPTOM -
Not sure if this was Day 6 or Day 7 FINGERS STARTED TO PEEL AT NAILBED.

Day 7 - Fever went back up to 99.7, 99.4 but he was feeling much better.
Peeling fingers still present.

Day 8 - Fever down to 98.9. Doing better. But
Peeling moving down towards palms.
Fever goes up to 99.7, then 99.4, 100.
NEW SYMPTOM Toes are peeling

Day 9-18 - Child still tired but improving.
Fever still hovers around 99.4, 99.7, not down to normal since being sick.
He has had itching , which lessened.

Day 20 - Saw Dr. again,
small rash on trunk reappeared, face slightly flushed,
swollen lymph worse and now under armpit also.
Tonsils still large as well.

Day 21 - Blood work completed after driving the Pediatrician crazy.
Day 21 - Finally EKG
Day 22 - Echocardiagram

Day 23 - Swollen lymph nodes hurt,
woke up today saying his legs hurt.


We did not receive the care or diagnosis needed for our son. Everytime we called the Dr., we were dismissed as being viral. We were their first case.

We were told yesterday that he did have KD and he is obviously on the mend.
Echocardiagram showed that his heart looked good for now.

We received No Treatment.
We received no instructions for what to do next.

Some reports say that children should receive the GAMMA treatment even after 10+ days. Any thoughts on this ?

What do we do now?

Utahmom
10+ Posts
Posts: 11
Joined: Fri Feb 09, 2018 10:53 pm

Re: Can you get treatment after late diagnosis

Post by Utahmom » Sat Feb 10, 2018 3:29 pm

Just talked to Cardiologist on Saturday no less about treating after 20 days.
He stated that if we still had a fever over 100.4 and blood markers that were elevated, then they would want to treat with IVIG regardless of the day of onset.

His recommendation was that since we did NOT receive IVIG treatment initially and had only 1 marker elevated but it was not elevated a lot and had an Echo that was good at 21 days, then he would like for us to begin a low dose baby aspirin therapy and continue 1 X a day for 6 weeks.

They will follow up with him in two weeks.

Will keep you posted as we begin our journey with KD.

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