Jenelle's Journey

Again, Jenelle keeps us on our toes. After our event three weeks ago at the ER when she had 4 grand mals in a day, Jenelle went 7 days without a seizure! We were thrilled, and hoped that her new medication (Topamax) was working. However, last Tuesday, Jenelle woke herself with another grand mal that lasted almost 3 minutes. I stayed with her that morning, and she seemed fine. Later that day, during a session of Physical Therapy, her therpist mentioned that she noticed some weakness on Jenelle's right side. Jenelle has always been weak on her right side, but had improved. Then, Jenelle had another grand mal on Thursday and Dr. Phillips sent us to the ER. New seizures and weakness on one side guaranteed us a CT scan and hospital stay.

Jenelle was admitted to Children's Hospital Thursday night, and stayed until Monday for observation. In addition to her CT scan, they ran a 48 hour Video EEG and of course according to Murphy's Law, she did not have a grand mal for them to observe. Her "usual" myoclonic seizures had increased, and some lasted as long as 2 minutes. I marked many of them on the first 24 hours of the EEG, but according to our Neuro, they did not show up as seizures on the EEG. This could simply be because her seizures are coming from deep inside her brain and thus cannot register on the EEG. We're not sure what that means. Although I feel we left the hospital without any answers, Brett pointed out that we have some relief in that her CT scan did not show a stroke, tumor or brain bleed. He is absolutely right in that sometimes no news is good news. Jenelle was also teething over the previous weekend and that could have lowered her seizure threshold. Another possibility is that as Jenelle "grows up", her seizures will change as well and we just have to get used to this type of seizure. They increased her Topamax from 15mg a day to 45 mg a day, and she seems to be stable.

We will see Dr. Phillips again this Friday, and hopefully I will have more to report. Jenelle did make it to her first day at her new school last Wednesday, but I don't know how it went because she missed her second day. I'll try to update on that as well.