Video EEG Monitoring

Yesterday, after coming home to an obviously stressed and concerned respite worker, I called Raquel's neurologist again to get some much needed input.

Because the concerns I have now are pretty much the same prior to the weaning process, he is not linking the two together. I asked him if he thought she could possibly be having true seizures now and he said that was highly unlikely, that he feels she is just reacting to something when she has these seizure like episodes. I will be emailing him a picture of her rash as well as a video of her having one of her "things." Again, just love her neurologist. He makes himself so readily available and definitely takes my concerns very seriously. He always acts like he has all the time in the world to talk, and makes sure he's answered all my questions before we get off the phone. That means a lot.

Dr. Mower did put in a request for Raquel to have a Video EEG Monitoring done. This is a 24-hour inpatient test that will be done at Children's Hospital. She will once again become my little Smurf, but this time she will stay at the hospital and be video taped at the same time. I will, of course, be there with her during this process. The test will allow the doctor to see how she is acting and then compare it to what is going on in her brain at the same time. Unfortunately, we are on a waiting list and probably won't be able to have this done for a couple of months.

In the meantime, he's wants to eliminate the Depakote and replace it with something called Lamictal. At this point, I don't care what we use to wean her off - I just want her off of the meds. It breaks my heart to see her suffer and I am constantly asking myself how much more she must endure.

Glad we've made it to Friday. This morning, she woke up with a little bit of a sparkle in her eyes. Let's see what today brings...