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My son and Kawasaki Disease

Posted by on Jan. 2, 2009 at 11:40 AM
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I read about Brian Littrell's family and how his son has been diagnosed with Kawsasaki Disease......Well this is my son's story.....This was written starting Jan. of 2007.  It is from another forum where I kept posts as a journal of sorts.  I didn't copy the dates that it was written, but it was over about a two year period.....

"Hi everyone. I read about the KDF in a pamphlet at the hospital where my son and spent the last 4 days. My son John is 10-and-a-half months old and was diagnosed on day 4 of fever. His case was caught in the acute phase, and we have been lucky so far. First notice a fever and a few spots on his legs last Tuesday night and called the Ped. after-hours line. They said give him tylenol and motrin and call if he is still sick the next day. Well he was and now more spots were all over his legs, chest and arms....his back was reddish and his groin was very red. He was also screaming still from the night before. My son NEVER screams or gets very cranky. Doctor said it was a virus and that the rash was from the fever. I felt it was more, but the doctor said it was okay. He was sick all night, now Thursday, and started throwing up and having diarhea. His hands and feet were getting red and so was his mouth. He looking like I dipped him in a red ant hill.....firey red spots everywhere. And his eyes were getting bloodshot (I thought from lack of sleep). Still doctor says its a virus and fever rash. Doctor seems entirely perplexed and sent us the affiliate Hosp. Pediatric Urgent Care for blood work. Off we go...but they didn't even seem to care. They took ONE vial of blood, and checked for the c-reactive protein, which the doctor on call said was high, and took a strep test. By now he is miserable, screaming, throwing up and diarhea, not drinking, not peeing, red tongue (not yet strawberry), swollen lymph nodes in neck, COVERED in spots, and at 103 fever. Guess what? After all this they send us home again, saying its viral and to come back Saturday if his fever is still high and to follow up with my son's doctor the next day. UGG.
By now it's Friday and I call the doctor for an appointment. They 'accidentally' say he has conjunctavitus and say they will leave a message for the doctor to call me back. This is 9am. By 10 I call my mother in a panic because I know something else is wrong and no one is doing anything. My husband is also worried. My mom comes over and talks to her boss, a doctor, and we head off to the best children's hosp. in the area, LIJ. Finally we were getting some where.
We were taken in immedietely, first to the triage, then E.R., then admitted. They immedietely said Kawasaki Disease, that he had all the symptoms even though it was only day 4 of the fever. He was started on an I.V. thankfully. And once settled in his room they sent for the IVIG and had him hooked up by 2am. Asprin therapy as well (still going on). Two doses of anti-biotics for a slight infection in his urine culture.
Sigh, finally home though. EKG and first ECHO are normal. Next appointment with Infectious Diseases (the doctor who is handling John's case at the Hosp.) is Wednesday."

"John saw his Infectious Diseases doctor, and everything is great. He is down to 1/2 asprin once a day, and no other restrictions. They took blood for a baseline workup. He needs another check up in 2-3 weeks and he seems the cardialogist in a week-and-a-half. Whoo hoo."

"Had a scare yesterday. John had/has a low-grade fever, his rash was getting red again, and he was screaming most of Sunday night and Monday. Took him to his new Pediatrician and they reccomended taking him back to LIJ. Well one E.R. visit later we are told it is not the KD coming back, but a plain virus and sent us home on tylenol and motrin. His blood work was normal for someone with KD, his platelets are at 900,000 already.
He is cranky today, but everything seems okay. Now at every cough or cry we jump."

"John was diagnosed on the 5th of this month....he was in the hospital till the 8th. Had his round of IVIG and anti-biotics and everything seemed great.

Then......Last Monday, the 15th we went back to the ER, John was at a check up and had fever (99*/100*), his rash was back and he was irritable again. The ER doctors checked him out and took blood (his platelets were at 900,000) and sent him home.
By Weds. John had his cardio check up. Everything was great on the Echo and ECG. John was cranky and didn't like it too much. Thank god we were there though, because John spiked a 102.7* fever and they admitted him. We stayed in LIJ from the 17th to the 19th. He is diagnosed with Incomplete Kawasaki Disease. Thankfully his Infectious Disease doctors and the Cardiologists and Resident Pediatricians all know John and about Kawasaki Disease and he was treated immediately. After another round on IVIG he seems fine. He was on Plavix and High Dose ASA in the hospital, but when they gave me his prescriptions at discharge they didn't tell me I needed a compound pharmacist to fill it, so he is just on 40.5 mg of ASA once a day (since there are no heart complications).
But now everyone (hubby, baby and I) all have a stomach bug. John is taking the bug well though, I guess compared to Kawasaki a stomach bug isn't that bad.
We see the ID doctor tomorrow and get the results of his last bloodtests, done Fri. the 19th.
Ohh, his bloodwork from the ER showed the SED rate in the 54's and the CRP in the 72's!!!!
Sigh, I hope his counts finally go down."

"New blood test results, from the 19th..... the CRP rate is in the 34's. Much lower.
Found out in a magazine that the normal adult CRP rate is between 1.0-3.0. Damn these KD kids are off the charts.

John seems well. Up for three hours last night, throwing up and cranky...but no rash, fever or other KD symptoms. We have a cardio appointment on Monday."

"John had his 4-month ECHO yesterday, and I am happy to say he is off asprin and doen't need another ECHO till November. He shows no signs of permenant damage, and everything looks great.

Kawasaki Disease red and orange ribbon at a time."

"I am so happy I can't stop smiling. John's bloodwork can back NORMAL! His platelets are at 382. At their worst they were in the 1,250,000 range. Yes, a million and a quarter! His CRP is <0.3. At it's worst it was 72! Normal is <0.5 mg/ml. And his SED rate (ESR) is 1. At it's worst it was 54! Normal is <21 mm/hr.
No more ECHO's until November. And no lasting damage.

Whoo Hoo! :D"

"John is on no medications.
He was treated Jan.5-8 and 17-19(I think) at LIJ. He received two doses of IVIG. Was on asprin until May 2nd.
He was being treated by his old pediatricians, who diagnosed him with a "virus". He was seen from Jan. 2-4 at their office and at Stonybrook University Medical Center. He was sent home from the hospital dehydrated, screaming, and given nothing but tylenol/motrin.
In truth I don't think I have really breathed since he was diagnosed. Its nice not to worry. Sigh. But there still needs to be alot done to get awareness out."

"John just had his LAST ECHO till next year. No complications, no heart problems."


Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God?" -Epicurus

"If I am not for me, who will be?  If I am for myself alone, what am I?  If not now, when?"  Pirke Avot 1:14

by on Jan. 2, 2009 at 11:40 AM
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