Crossing my fingers that it proves to be beneficial.
We are heading for our 4th week in hospital tomorrow. My 3 yr old daughter was admitted to our local hospital and has had 2 rounds of IVIG, one on the 5th day and one on the 11th. She partially responded to the first dose and the 2nd made not a jot of difference. Her first heart ultrasound on the 8th day showed no coronary abnormalities.
We were sent home on weekend leave and her temp stayed at a pretty constant 37-38. She was unable to walk or sit up and was in huge pain and discomfort. Her joints swelled, her eyes were puffy, her left eyelid was drooping badly and her lips were still continually cracking and peeling. I'm pretty certain she was suffering from Aseptic Meningitis also.
On the 15th day we went back for bloods...they showed that her CRP and ESR were creeping back up slowly and her platelets were elevated. As we were in the 3rd week the platelets were following the KD expectation but they were not happy with the CRP. The 17th day had us back for another ultrasound which was also clear. Bloods on this day showed no change...CRP and ESR still on a slow creep up, platelets slightly reduced, temp still spiking on occasion.
We were then referred to the local children's hospital as they felt she had not responded appropriately to the IVIG. On the 18th day she was started on IV steroids....methylprednisolone....initially for 3 days then changed to 5 with an oral dose to follow. Tomorrow will be the 21st day since she started with KD symptoms! The change in her since the IV steroids has been immense. No pain, temp back to normal, most of the swelling has gone down, her lips are visibly healing, her eyes back to normal and she is back to being my little cheeky monkey again. They have done so many tests, ultrasounds, x-rays since we came here that my head is reeling. There seems to be no heart complications as yet though. Fingers toes and everything else crossed.
I have read that steroid therapy can cause increased problems with aneurysms so I am hoping that I am interpreting it right in that it is when they are given to kids who ALREADY have the damage it worsens it, not that it can cause them of its own accord in a child who was not displaying any abnormalities.
We are due more bloods tomorrow and another ultrasound in 3 weeks. I am hoping that all being well we will finally be able to go home this week when the IV is done...really don't want to complete week 4 still in hospital