I’ve tried in vain to organize my thoughts over Rhema’s test results from her hospital stay earlier this week.
The good news is that her EEG came back clean.
The not-so-good news is that the only medication that seems to stop Rhema’s seizure-like activity is high-dose diazepam/valium. There is a risk that Rhema will become addicted to this drug with long term use.
A little less than a year ago, a very high-dose diazepam protocol was given to Rhema in order to “rescue” her from a pattern a continuous mini-seizures. The results were astounding – she went from a spike index of 85-100% to less than 2%. We were thrilled!
Because of its addictive properties, our neurologist did not want her to stay on the med long-term. We immediately began weaning her over several months. The hope was that the first bolus had shocked her brain out of the seizure pattern and that another anti-seizure med, Lamictal, (non-addicting) would maintain the seizure-free state.
An EEG in June confirmed our fears that the seizure activity had indeed returned with a vengeance. She was put back on the diazepam, and now, several weeks later, her EEG is clean again.
Over the past 3 years, we have tried many anti-epileptic meds to no effect. Her options:
1) Diazepam long term
2) Intensive steroid therapy – her dr. is very much against this
3) A brain surgery called MST – definitely a last resort
Our “choice” for now is clear: uncontrolled seizures or unknown reactions to the drug in the future. But the last thing we need is a child with symptoms of drug dependence, and my biggest fear is putting a 5-year old with autism through some horrible drug withdrawal down the road. (Not to mention, the diazepam makes her very h-y-p-e-r-a-c-t-i-v-e – as if we needed more of that. Ugh!)
How long term is long term? Nine months? A year? We don’t know.
But for now, her brain is quiet and she has a chance to really learn and perhaps even gain language. And for that I am grateful.
But no matter how I spin this, I just can’t seem to get settled on it. Maybe I’m numb. Truly, I don’t know what to think, how to feel. There is fear, worry, and hope… always hope. There is information overload from googling Landau Kleffner syndrome and diazepam dependence all night long. There is the constant wondering if we’re doing the right thing for her.
An autism mom who reached out to me years ago recently told me something so simple yet so profound that I’m clinging to it now. She said, “I will pray the Lord will give you peace today as you learn to lay tomorrow at His feet.”
So here we go.