Be Careful What You Blog About… I typed into Facebook on Saturday as I sat in the urgent care clinic waiting for my son to have his head stapled back together. The last post I had written espoused a theory that you should not tell your children about the fun things you had planned ahead of time, in case something went wrong and plans were derailed. We were now in danger of missing “Marvel Universe Live,” which we had made the mistake of telling the children about that morning, causing the universe to lash out at us for our hubris.
As it turns out, despite a head wound, we made the show after all. The urgent care place, though they initially tried to turn us away, did fast, good work, and we were able to see Captain America flying through the air doing somersaults on a motorcycle, Spider-Man swinging on his webs through the arena, and Captain Marvel zooming through the air, blasting bad guys alongside the likes of Iron Man, Thor, and Wolverine. It was some good, cheesy fun, and I looked forward to typing a review for Monday’s post. Unfortunately, Monday did not have a post.
Sunday morning the seizures started again, and they did not stop until Monday morning, 24 hours later. We were back in the hospital, and all the drugs in the world seemed to be completely useless to stop what was happening to my son. This was when the doctor sat us down for “the talk.” And when “the talk” is written in quotation marks, you know it is not going to be pleasant.
What we were told is that we are out of options. The drugs are not working, and thanks to the law of diminishing returns for epilepsy medications, the chances of a new drug working were somewhere in the 3-5% range. The seizures were very likely never going to be controlled, and now we had to start putting together a life for Edward that included seizures as a major component. In the doctor’s opinion, we ought to go off of most of the drugs, so that the good days were clear and bright and functional, and prepare ourselves for the bad days, which were going to come whether or not we were on medication.
This is not what we wanted to hear. His sister, as I’ve written about before, had her epilepsy controlled by medication, and she grew out of it. Ruby has not had a seizure in almost 3 years, and has been off meds for almost one. This is what we wanted to hear would happen for Edward as well. Why wouldn’t it happen? Their timelines were almost the same! Both starting just before their 4th birthdays, both having full control for a time with meds, both completely losing control as they began kindergarten, prompting E.R. visits and med changes and confused doctors, and then seizure free by Christmas! Another month or two of this crap, and Edward will be out of the woods, right?!
Now I should mention at this time that our actual doctor is in Saudi Arabia right now, so we were getting a second opinion from his clinical partner. Our doctor is of the mindset that 3-5% is much better than 0%, so let’s try that new drug! His partner is of the mindset that 3-5% is very close to 0%, so since it is statistically unlikely to work, let’s get off drugs and have as normal a life as possible.
A normal life. I had an idea of that once. But now what does that mean? Constant care, constant vigilance, constant anxiety? Never being able to bath alone, or swim without a life jacket? No trick-or-treating on a block where strobe lights are present? No playing outside in summer for more than 30 minutes due to fatigue and heat, which can cause seizures? No driving, ever? What does the future look like? And what happens when he goes to college and I am not there to protect him and watch him? Does he even move out? What does a life look like for someone with seizures? It is not the life I have envisioned for him. It is not the life I have envisioned for me. The future is gone, replaced by a darker timeline where everything is just a little worse than it ought to be, where peace is fleeting, and where rest comes rarely, if at all.
At least that’s if that one doctor is correct. We do have a few options. We are going to be going to Boston to get a third opinion. The only problem is that our current doctor built the program in Boston, and the doctors there often refer their patients back up here. When I asked for a referral, they had to do some searching, because no one has ever needed one before. We have the best guys on the east coast. But hey, even the best guys can miss something. 3-5% chance? I guess we’ll take it.
We also have the option of some drastic dietary changes, which we were told really only act as another “drug” and so still have only a tiny percent chance to give us full seizure control. It might not be worth it then, but then again we might be desperate. And of course there is the cannabis oil, which worked on one girl named Charlotte, and has never worked so well on anyone ever again. But it worked on one girl! It might work here! 3-5% chance! We’re grasping at straws here! Please, send us more straws!
In the end, I can only live my life as it is presented to me, making changes and decisions as best as I can. We were out of the hospital on Monday, only to go back in Tuesday night after six more seizures in a row, but then back out on Wednesday. Edward actually went to school yesterday, and he did great. Then he came home and had three more seizures last night. We did not call the doctor. We did not go to the hospital. We held him in our arms and we wept, helpless before the evidence of our new future. We watched over his tiny self through the night, and he woke up just fine and went off to school. Life is no longer on hold; we just have to keep living it. We’re going to make it as normal as we can for him. And if his seizures go away on their own, or via some new miracle drug, that would be great. And if not, well, we have a new future to get used to, and it’s not doing anyone any good by putting it off. Here we go…