Day four and still no seizure. I am waiting, like a kid at Christmas waits for Santa, to see a seizure rear it's ugly head. I want her to have one. I need her to in fact. It is so very, very important that she does it now. Let me tell you, it is an odd sensation to be wishing for your child to seize because, ultimately, it will be for her own good.
Every time Tess tenses up I spring like a coiled rattlesnake ready to 'capture' the event. And usually she would have had at least two by now. But you see, my Toodle Bug plays by her own rules. And right now she is refusing to even get into the game.
I know it sounds wrong to say that I want my child to have a seizure so let me explain how I got to this seemingly 'sick' state of mind.
The Toots has been diagnosed with a seizure disorder since around the age of three or maybe a bit younger. The hubby and I immediately felt like Childrens Hospital in Boston was the best place for her to go. We have never once regretted that decision.
We met her neurologist, the very knowledgeable Dr.Coulter, who, after giving her a forty-eight hour EEG, ordered a medicine called Keppra which controlled the seizures for nearly three years. It was like a miracle drug. Then two summers ago something changed. Tess began to seize uncontrollably.
We rushed her to the mainland and she was admitted into the Special Care Unit for a day and a night. The Keppra was increased and seemed to work but a couple of months later the seizures started up again and this time The Toots was in bad enough shape that she had to be taken by ambulance from Rockland to Childrens in Boston.
I rode in the ambulance with her and let me tell you, that sucked! And not for the reason you would think, that I was scared for The Toots. No, it sucked because I was riding backwards in the 'jump seat' and it bounced all over the place. But it was also funny because my little Angel was flirting with the paramedic between seizures. Giggling and batting those big brown eyes at this huge teddy bear of a man named Justin. It was just too cute.
At any rate we arrived safely in Boston and Tessie was seen by her team, given another EEG, increased her Keppra once again (now near maximum dosage), gave her an MRI and sent us home. Like before, the seizures were controlled. This time for almost a year. Then, once again, the pattern repeated itself.
Uncontrollable seizures, ambulance ride to Boston (this time Buh rode the 'jump seat') and a three day stay at Childrens trying to figure out how to treat The Toots.
To date, no matter the amounts or types of medication we have tried, and God have we tried a lot, nothing works that will completely control them. She continues to have break through seizures. To the point where I researched the Ketogenic Diet and we began that as a treatment. Even though the diet has many health risks, we figured we did not have much to lose because the seizures were beginning to not respond to emergency interventions. In short, we were losing the battle and fast.
When she first started the diet we thought we had found the miracle we had been looking for. For three whole weeks Tessie was seizure free, then BAM, like a thunder storm after a heat wave, they were back. At first they weren't bad. Maybe one every ten days. Then every five and now nearly every two.
I try not to dwell too long on what this may mean for The Toots. It is just too scary to even consider. But like a mosquito buzzing in your ear that you just can't seem to ever quite swat away, I feel the fear trying to gnaw it's way into my brain and heart. I refuse to cave into it.
Failure is not an option.
And so we are back to what prompted this EEG. The doctors, all of them from Epilepsy to Neurology, to Genetics, to her pediatrician want the results of this monitoring. Hopefully it will tell them something useful. Something that will break this vicious cycle. I pray they find the answer but I fear that there isn't one.
But right this minute, right this very second in fact, I just want that kid to have a seizure so we have something to work with.
As I finish this blog post Tessie is in bed with Baby Tad singing her lullabies.
Still no seizure.
And so I continue to wait with bated breath...