Really, there is more to our lives than just all the medical stuff that we do, but it does take up a lot of our time and energy, so I suppose its right that we blog about medical stuff the most :0)
Darby did have an overnight EEG at UCLA last week. It was successful and the doctors were able to see a good amount. They saw that his spasm activity is gone, and so the steroid medicine is doing its job. We can continue to ween him off of that! However, they did notice at least one seizure that Darby had. They said it wasn't connected to the IS condition, but rather just an individual seizure. They called back yesterday to inform us that after reviewing the tape again, they noticed he actually had 4 seizures. They were very unnoticeable in the video and will be reviewed again to see if they are just happening at night or sporadically during the day. Darby is already on the right medicine that he'd need for seizures, and so we are just going to up the doses to treat the seizures more aggressively. In the following weeks we'll have to investigate more to see what is causing the seizures.
I can't say enough how absolutely blessed we are. UCLA is a fantastic hospital. The pediatric neurology team is so incredibly experienced with Infantile Spasms, that it really puts our minds at ease. We are able to get tests done and get results immediately! I've heard of families who have had EEGs done and then had to wait weeks to get results... I just can't imagine how hard that is! Our attending doctor for this last week's admission was Dr.Shields, a wellknown IS specialist. I asked him if he was surprised that Darby was doing so well, and he said that in his experience, the sooner you diagnose and treat IS, the better the outcome is. That was definitely the case for Darby. He was diagnosed and treated in 2-3 weeks, max. God has been so good to us and we can't believe how blessed we are.
Everyday brings a new struggle to deal with, but God hasn't let us down yet. Today I have really noticed Darby's lack of appetite. Amazing to think just one week ago he was scarfing down anything and everything. The steriod had really kicked in. Today, its weening down and his other meds (which decrease his appetite) are higher. It was a fight, and I mean a fight, to get him to eat his 3 oz this morning! Ug.
But thats it for now. Darby continues to be a happy baby... as long as he gets his naps. We are in progress of starting a new physical therapy program and occupational therapy. We can't wait to start it!
I'm sure I'll be back later to add some meaningless ramblings :0)
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