Julian's Story...

Personal stories of individuals and families affected by Kawasaki disease
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Brittni
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Posts: 4
Joined: Sat May 04, 2013 6:38 am

Julian's Story...

Post by Brittni » Sat May 04, 2013 7:05 am

I'm going through this right now. Julian is four years old and started getting sick on Saturday with a fever and positive strep test. After starting antibiotics, things were getting worse and not better. We went to our pediatrician in Monday and was blown off and not listened to. Julian had the beginning signs two days after starting the fever. The eyes started to get red two days after fever began. On Tuesday, he still had high fever (103) and vomiting with the classic KD rash and red eyes. We went to an ER. We left after four hours, 10 words from an actual physician, and an injection of penicillin, with a diagnosis of scarlet fever. Scarlet fever would make sense if his eyes weren't bloodshot. That night, he was still throwing up and had a high fever. Four days of oral antibiotics and an injection should be relieving some of these symptoms, I thought. Something wasn't right and I knew it. On Wednesday, I made a list of a few things I thought it could be. We went to another ER and got seen so fast. Julian looked rough. By Wednesday, the cracked bleeding lips had started and I couldn't touch his skin without pain. The ER at this hospital had pediactric doctors on staff 24 hours a day. It was amazing. After the doctor looked at him, she said that she thought he had Kawasaki Disease. I cried. That was on my list. Someone knew I wasn't crazy. It was a huge exhale just to hear that. Then, the second part of our journey begins.

After hearing that, we were sent on an ambulance, with the lights and sirens on, to the ER Texas Children's Hospital in downtown Houston. There were no beds available in the hospital, so we started our first IVIG treatment in the ER. We were told that Julian was textbook KD. Most kids don't get every symptom, but he had them and they should have taken a picture for their doctor books. By the end of the 12 hour treatment, his fever was gone and he was noticeably feeling better. An echocardiogram shows that Julian has dilation in two of his coronary arteries. He only had fever for five days and he has damage to his heart. They say that within 10 days is the "safe zone". I can't imagine what would have happened if they would have kept sending him away. We are still in the hospital and cardiologists and rhumologists are watching Julian closely to see if he will have more heart damage. This is serious.

My mission has now changed. It's not to figure out what's wrong with my baby. That part is done. Now, I feel like I've been called to help other parents who's voices are being ignored. It's still early for us, but we are going to change the world. :)
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Farah81
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Posts: 7
Joined: Sun Feb 18, 2018 12:43 pm

Re: Julian's Story...

Post by Farah81 » Mon Feb 19, 2018 12:21 am

Hii...hows julian now???

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