So Becca has continued to have problems. So much so that when she went for her MRI last week the Neurologist who came down to turn of her VNS quickly agreed with me that something was wrong. Rebecca was – well just not Rebecca. This is a child that normally during the time before her MRI scan she is practically climbing the walls, and I’m doing all I can to hold her down (or leaving her in her wheelchair for my own sanity!). This time, she would lay on the stretcher, not 100% still, but no one had to keep a hand on her at all times.
The Neuro person (although I think it was a RN or PA), asked what types of seizures she typically had, and when we last gave diastat. Thankfully I had all that on my Android Tablet. I showed her a video. I showed her the spreadsheet with the seizure data. She showed the video to the Pediatrician who checks kids out before their scans. Both agreed it may not be safe to give Rebecca a scan as she was. So they made some calls, and did some magic. Becca was sent upstairs to get an EEG first to make sure she wasn’t in status. This was a huge relief to me. This was what I wanted done if her MRI was clear. So she was just getting the EEG first.
That took a while, they monitored her a bit longer than they would for a regular routine EEG. She wasn’t in status. Her regular EEG pattern is quite abnormal, and that is just what it was. It showed a few seizures (which I knew, I was laying with her on the hospital bed the whole time and saw them). The good news is, the EEG captured the two big event types she has now.
So after her EEG we went back downstairs for her MRI, since we now had the all clear to proceed with that.
Once Becca was back on the scanner I was able to go grab some lunch Becca can’t eat before a scan since she is sedated, which means Mommy can’t eat in front of her (I’m not that mean). Once her scans were done I went upstairs to try to catch her Neuro-Oncologist. The fabulous Dr. G. We had long since passed her appointment time because of the EEG. But I was advised to go upstairs since he would be able to pull the scan results already and may be able to still meet with me.
the receptionist called back to him and he said he would call me with results. He did – by the time I got back downstairs. Alas, I had cell phone troubles and had to use the phone in radiology to get back in touch with him. But it was so nice to have the results of her scan before she was even back in recovery! I kid you not – I had not even seen her after her MRI and I knew her MRI was stable!
She took forever to wake up from sedation because of stupid seizures. She would wake up, have seizure and go back to sleep. Yet thankfully we were allowed to go home. That evening we ended up giving diastat. She came around.
Saturday was another tough day, requiring Diastat AGAIN. Same thing on Monday, which also had me hold her out of school. I got in touch with her Neuro Monday. Yes, ironically enough, through everything last week I had not spoken with Dr. Mikati yet. Well, okay I didn’t talk to him Monday, just his nurse, Renee. But we talked about what meds Rebecca is on and what meds she has tried before.
The final decision was to try a new medication. Rebecca has started on Trileptal. Well – okay the generic, which is some crazy name I can’t spell or pronounce. I’ll have to stick with Trileptal for now, which I can spell. She is getting 300mg 2x a day.
Hoping this helps. Epilepsy really sucks. We already know we are in this for the long haul. We may one day find some drug combination that gives her a better level of control. I have faith that one day God will fully heal her. I do not know when those days will come. I hope she continues to enjoy life as much as she does. She is a blessing. I just can’t get enough hugs and kisses out of her – no matter how much I hug and kiss her. Its a good thing she is a snuggle bug! I told her last night I had to get in as many hugs as I could while she was still small, and that she was nowhere near as small as she used to be. And for those who have never been lucky enough to get a Becca hug or a Becca kiss, you are missing out. She gives good hugs. Okay – her kisses are wet and slobbery, but she knows what it means when you ask for a kiss.
School is going well for her. The first quarter is nearly over already. Hard to believe. Becca has a new classmate – and trouble because it is another cute boy, and another first grader. Jameson better step up his game – he has competition now! Hahaha! Although considering there are 4 boys in that room and only 2 girls, I don’t think the girls have much to worry about.
Well I can’t think of much else to write, so that is all for now.
thanks for reading and have a blessed day.