Caring for C. has become a consuming and stressful ordeal.
While I type, we are deliberating over whether to call an ambulance as her pediatrician advised, She's just been in status epilepticus for an hour and a half. For the moment, the seizures have petered out and she's asleep so we're holding off because I just hate being in hospital with her.
What precipitated this crisis is that she has been off the Valproic Acid for one week now. The only treatment she's been receiving is cannabis oil: CBD 3x/day and THC whenever she had a string of seizures which wasn't often.
But we had been instructed by her new neurologist to start her on Vimpat while weaning off the VA and I disobeyed those instructions. Why? I had this pipe dream of having her off any anti-epileptics for the first time in twenty years and perhaps glimpsing a modicum of cognitive recovery.
But I now regret my little "experiment". Our devoted and wise pediatrician sounded puzzled (even annoyed) tonight when I confessed that C. hasn't been on Vimpat all along.
And in the background of this crisis is the new liver diagnosis we received on Sunday when we visited her new gastro: Autoimmune Hepatitis. He is now 80% certain that it wasn't the Valproic Acid that damaged her liver - as he'd presumed earlier - but rather this disease which almost never afflicts anybody as young as C. Further tests - a fibroscan and a biopsy - will clinch the diagnosis.
To add salt to the wound: we have been giving C. diuretics to drain the fluid which has been accumulating due to her liver damage. The result is a shockingly gaunt child. Clearly, she had been harboring excess fluid everywhere, even her face, for quite some time.