She was mentioning a tightness of the chest, feeling tired and ‘unwell,’ and a fever of 40-42 [celsius] that I treated with Tylenol/Advil and cool baths but couldn’t shake. At the 48hr mark I called my Dr. and she suggested we go to the Hospital for a chest X-ray in case it was asthma related. The X-ray showed some reactive passages, but as we waited in the waiting room for the doctor to see us her Tylenol/Advil wore off and her fever spiked and she was face flushed face, grey lips, dizzy, started vomiting, admitted she was feeling really unwell.
The Drs seemed to know right away. They noticed a strawberry tongue, a rash that appeared around her face occasionally but seemed to coincide with when the fever spiked, raised heart rate, no other symptoms until later. We were admitted for a few hours before being transferred to BC Childrens where they took some blood and said the markers were there, then a heart test, and then told me it was MISC. I would say it was 3hrs at the new H when they confirmed the diagnosis. No husband. No sleep in 3 days as I was checking her temp every 2hrs. I was very stressed. The doctors recommended steroids and IVIG. I was unsure about the IVIG as the side effects seemed really scary. I contacted a friend with pharmaceutical background who said that IVIG was used for the systematic shut down of organs.... she said to stop thinking and just say yes. I wish the Drs had told me it was for the systematic shut down if organs - I would have not thought twice about it. They did 9 bags of IVIG. I think... I believe that 3 were just fluids but I could be wrong. I was very sleep deprived and so stressed out. Admitted dec 12. Released dec 21. Still feeling not 100%.
Parents need to know that they child will change dramatically at a fast speed, and it gets worse before it gets better. Jillians siblings were not permitted to come to the H and that was very hard on her. They FaceTimed and all of them bawled every single time. Also, I’d suggest counselling after for the child, Jillian almost had ptsd from this experience. Just hearing and ambulance will raise her stress levels, I didn’t realize she was awake during our H transport but clearly it affected her. As I type this I’m already emotional and stressed. Counselling counselling counselling! That’s the beat advice.
Below is a timeline of JK9’s observed symptoms, diagnosed conditions, and treatments and therapies.
Diagnosed at 9 years
There were additional symptoms: fatigue, trouble sleeping, itchy feeling, muscle aches, internal shaking, brain fog, sore eyes, blood shot eyes.
Began at: 87's parent isn't sure