Madalyn, my mom, and I met with Dr. Wyllie today. I gave her a copy of the MRI and EEGS. She asked a lot of questions. She is very direct and methodical. I was scolded a few times for asking unsolicited questions and/or offering additional information. However, I was told this is how she is, so I was fine. I liked her quick thinking and decisive conclusions.
In the end she went over the fact that there are 4 avenues to manage epilepsy. Medication is first, which she said we had given long and dedicated trials.
Next is surgery, which has basically 3 categories of patients. One is cut and dry (that's not us), two is the "maybe" category. That's where she said Madalyn is. This means we have to carefully weigh the benefits and risks. Her biggest concern is that Madalyn has very good function of her affected side and if surgery needed to take out any of her motor strip, her hemiparesis would be worse. And the third category is the patients that are not a good candidate, either because their seizures do not have a focal point, or are not in an operable area.
Since she is doing good on her new medication (Oxtellar), the plan is to NOT consider surgery right now, but go ahead and see if she is a candidate so that if we are in yet another "honeymoon" phase of a new medication, we know what our next step can be. To determine if she is a candidate they will be looking to see if her seizures have a focal point (which Dr. Whyllie thinks they probably do (I'm guessing since they are partial onset seizures and a brain injury is the root cause of her epilepsy.) Second, they will be looking at how much would need to be removed and what deficits that may cause. After this, we will know if she is a surgical candidate if/when Oxtellar stops working, and if not we will know that we will be looking at the next two avenues.
If surgery is not an option, the other two avenues are ketogenic diet and vagal nerve stimulator. These are discussed for patients that are not surgical candidates. The diet is VERY limiting, and not without its own risks.
So, tomorrow's plan is to have an eye doctor appointment in the morning, then MRI with sedation. Next she will be admitted for monitoring. She will stop her medications and Dr. Whyllie says we will be here until she has a seizure.
Of course, my fear is that she won't have a seizure. My other fear is that they won't see the spiking or the seizures, and that could mean our problems stem more from her stroke and less from seizure activity. What I hate about that is that would mean our problems are not fixable. By problems, I mean her huge swings in the ability to learn, as welll as periods of big meltdowns and regression in everything. For example, for a time, Madalyn had stopped being able to do monkey bars, stopped making her own snacks/lunch, unable to understand the difference in addition and subtraction. Since starting Oxtellar, all of this has come back. But, she has done this several times over the past 3 years. That's why I'm afraid after a few months on Oxtellar, her gains will once again disappear.
Her history points to seizures, but at this point, and after trying so many medications, it's very difficult to tell what was medication side affects and what was seizures. We do know, and Dr. Whyllie reiterated, that epilepsy and behavior and cognitive problems go hand and hand. She said her plan is to work very hard to get to the bottom of Madalyn's issues. They will then present her case to 30 professionals and come up with a plan for us.
So, a whole lot depends on what they see on the EEG. One year ago, Madalyn's EEG showed a lot of spiking in three lobes. But, the past 3 EEGs (on medications) didn't show anything. So, the question is what will her EEG show when she is off her medications.
Hopefully we will know a little more tomorrow, and even more the next few days as her medication leaves her system.
