Sunday, October 9, 2011

what's recent


With the good comes the bad, it seems.

Emily's seizures have gotten out of hand again.

We went from just a hand full of seizure per week to 60-80 on one day, resulting in multiple doses of emergency meds and multiple calls to her neuro.

All day seizures for Emily equals no sleep. Most kids sleep a lot after seizures but not Emily.

Just last night she only slept maybe 4-5 hours and none of that was in a row.

She just had a sleep deprived eeg to see whats going on. When we do a sleep deprived eeg Emily can sleep from 11pm until 4am. I have to wake her up and keep her awake (fun)
We did a really good job, both of us were ready for a nap when we got home.

Her eeg showed an increase in seizure activity compared to the last eeg. There are some other changes too and she is already scheduled for a brain MRI to see whats new.

She did just pop another tooth through but she is still having daily seizures so that rules that out.

She also had another UTI when her seizures picked up, we treated that and did a recheck and her urine is clean now, so that rules that out as well.

While we are on the subject of UTI...
Emily has had several and while we do the very best we can to prevent them, (keep her well hydrated, clean, probiotics ect...) she keeps getting them.

Kids like Emily with low muscle tone can have bladder reflux where the urine goes back up into your kidneys and causes infections.

Our pediatrician suggested we do a kidney ultra sound to check for damage. If anything showed anything we would do a more invasive test.

Thankfully it was normal.

She was such a good girl during testing!

So here we are. Back to the drawing board.
We are waiting on new medicine from Canada called clobazam.

It is not FDA approved in the US, yet.

I just want to take a minute and say how thankful I am for Emily's neuro.
He makes himself available to us all the time. We have his cell phone but for after hours I don't want to bother him :) The on call neuro called him and within minutes I had a call from him wanting to know why we did not just call his cell phone to begin with.

It makes me thankful to know that someone cares for my daughter so much. He does not have to do that.

Please pray that this new medicine will help Emily.
I hate trying a new medicine, especially with all the recent development she has had.


  1. I am so glad you have a good doctor who really cares :) I'm praying for you all daily!

  2. It sounds like you have an amazing dr. Will they have to put her under for the CT? I'm so glad her kidney ultrasound showed everything is normal.

  3. Chandra, Yes, she will have to be sedated for her MRI. We are doing 2 tests while she is under. She is getting a hearing test that she has to be sedated for.