Not so long ago, we used to say, "
If we could accomplish reducing Roxy's seizures from the 25-50 per month she was having, to just 10 seizures a month, we would be happy!""Wow! wouldn't THAT be great?! Wouldn't life seem so much easier then?"....
We went into the neurologist's office fully prepared to discuss a medication that had been presented to us at one time, but we declined, because it would require a hospital stay. In order to start it, Roxanne would have to have an EEG to monitor her brain/seizure activity, (during one visit, the tech was annoyed at how often she was called to replace the leads for Roxy, and became impatient with her. While trying to put them back on, Roxy became very upset, because she doesn't understand what is happening, and being held down causes her tremendous anxiety. The tech started becoming rough with her, and began yelling "Hold still! "Hold still! Stop it!", at her while putting the leads back on. Roxy was screaming, and becoming increasingly stressed. I yelled 'Stop!' I put a halt to it, told the tech to leave, lucky that I refrained from punching her, and had the nurse call the neurologist. We left the next day.), have an IV ready to administer medication to stop seizures if she begins going into s
tatus epilepticus (a life-threatening condition in which the brain is in a state of persistent
seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes), and weaning of one of her current medications. In the weaning process, until the new medication reaches a therapeutic level,
if it even works at all, as the medication is removed, it may cause seizures to start, known as 'break-through seizures'.
At the time that the medication was presented to us, it wasn't long after my third back surgery, so I was not emotionally, or phsically prepared for the stress of what it entailed, staying with Roxanne during her hospital stay. She can not be left alone at any time, and needs continuous supervision. Keeping Roxanne occupied, and entertained during a hospital stay is
extremely stressful, and takes a toll on me. During one stay, I left briefly to go to the bathroom, fully believing that she was engrossed in watching a video, and while I was in the bathroom, she flipped over the railings on the bed, landing on her head. It wound up prolonging our stay, because the doctor wanted to do a cat scan. Sleeping on the chairs that pull out to a bed leaves much to be desired, and not exactly back friendly. We felt the stress of the hospital stay, the risk that the med wouldn't work, what effect all the fluctuations have on her, the risk that if by weaning a current medication and the new medication doesn't work, may cause her to have more seizures that are irretrievable, was a risk that we weren't ready to make.
Keep in mind, that we have accomplished getting Roxy's seizures to the 10 per month (give or take) that we used to dream about. But, like anyone, we continue to try. Try for better. Try for 5. Then 2. Then 0. Her seizures are harder now. They take more of a toll on her, and she doesn't recuperate as quickly. So, although she has less, it feels worse. Much worse.Watching her suffer through them is heart wrenching. Which, is why we have made the decision to want to try
anything that will help her, and stop her suffering. Including the medication that was presented to us at one time. We learned from a friend whose daughter takes the the med, that we
may not have to go into the hospital to do it. With that in mind, we were more open to it.
During the office visit, after going over the usual things, her neurologist said that she felt Roxanne was doing very well overall, including seizure control, and was very pleased. We discussed the tethered spinal chord, and Syrinx, that was discovered last year. We will have to follow them, and do yearly MRI's to watch the progression, if any. She wants a current EEG, which we will try to do during the holiday break from school. When we mentioned wanting to try that medication that she suggested a while back, she said,
"Why? She is doing so well. We have achieved the best seizure control she has ever had." We had thought we maxed out on her current medications, including the one that we started a few years ago, one from Canada. It is the drug that we feel has given us the best result in reducing her seizures. The 'cocktail' is the best so far. But, now that she is a bit older, she can use a bit more, so we have some room to tinker with. So we shall. And, maybe we can achieve less seizures now. My lips to God's ears!
So, I left feeling hopeful again. I was reminded that we
have reached a goal, and to be grateful for it. We have room to play around with her meds. We don't have to go through the trial and error process again by weaning and adding medications. At least not now. We were saved from a hospital stay. And, her doctor told us that she was at a seminar recently with her colleague, a doctor who has also worked with Roxanne, presented by a genetic researcher from Australia, that a gene was found, PCHD-19, that appears to cause seizures, Autistic behaviors, and severe cognitive delays in girls, along with other factors. During the seminar, Dr. Goldberg said to her colleague,
"Doesn't this sound like Roxanne Saxe?" Until now, we do not know why Roxanne has seizures. We've done all the testing available so far, all coming up empty. She said that this discovery, and research is so cutting edge, and we know so much more now than we did, even ten years ago. It is so cutting edge, that we may not even be able to test Roxy for it yet, but she is going to try. She asked us, "
Wouldn't it be nice to know why, and put it to bed?" Yes. Yes it would. It may not change anything, but at least we would know
why. And, who knows. Maybe in the near future, we will know even
more....
