I’ve collected lots of photos over the years of her in the hospital for EEGs. I’ve kept time in my heart and mind on all the effort spent making sense of the seizure activity in her brain.
The pictures remind me of our history, the long trail of medications in treating Rhema’s Landau Kleffner syndrome. Depakote, Keppra (aka Kepp’rage’, nightmare drug), Lamictal, Diazepam and combinations thereof and countless EEGs.
We’ve recently had a long period of respite in terms of Rhema’s epilepsy. But it has not been without cost. Just before Brandon deployed we made the difficult decision to put her on a high dose diazepam/valium protocol – the only drug that seemed to calm the continuous spikes in her brain. The medication can be highly addictive with long-term use. In fact, she went on it a couple years ago in the hospital and even though she had a clean EEG for the first time ever, doctors weaned her from the drug immediately and put her on another (non-addicting) anti-seizure med. The seizures came back with a vengeance.
We decided to go back on the diazepam long term, not knowing what “long term” meant but knowing it probably could not mean forever. We just knew this was a chance for Rhema. With her brain quiet, she could really learn and even gain language.
So it’s been over a year and I have not given much thought at all to spikes and absence seizures and EEG’s. Such a relief. In fact, only when I come across an old picture every now and then do I remember that we are on “borrowed time”.
Last month when I called for a new authorization on Rhema’s anti-seizure med, her neurologist got antsy.
Time’s up. Time to deal. Time to re-evaluate. There’s always something, isn’t there?
We are at the crossroads again… facing what seems to me in my freak-out moments like an almost impossible decision.
Is the med still as effective as it was a year ago? Is she good and addicted now after a year on the drug? Will she go through some frightening withdrawal if we take her off? Will the seizures come back again? Will she lose all that she’s gained? Do we dare take her off?
Zero hour is almost upon us.
24-hour ambulatory EEG on Monday.
“O our God… we have no power to face this… We do not know what to do, but our eyes are upon you.” 2 Chron. 20:12