Time for a new neurologist

We visited C.'s neurologist last week. 

Just a reminder: this doctor was on the team that rendered C. semi-comatose with a barrage of drugs in November 2017 to combat her status epilepticus. Her specialty is the treatment of headaches. We had no clue about that when we began bringing C. to her. She came highly recommended by C.'s pediatrician.

At this latest visit, we related C.'s fever and seizure woes to her and showed her a video of C.'s aquatic skills. We noted that the raised dose of Keppra and the addition of Vimpat, which has been C.'s regimen since hospitalization, has left her in the same state she was in pre-hospitalization. No improvement whatsoever. We'd like to try her on Keppra alone again, we said.

The doctor then told us we ought to consult an epileptologist. For me, that translated into: "This case stumps me; it's not my field of expertise. Try an expert." No news to us. But we reminded her that the neurologist who helped rescue C. from that near-coma in 2017 and is a colleague of hers, advised us to use her as a conduit to him. We can't consult him directly because he doesn't have a practice in this country. He earns his living from home by assessing scans from overseas patients and advising treatments. And then, once a month he spends a week in the neurology ward where C. was hospitalized last year.

After the neurologist assured us she would seek that other neurologist's input, she added, almost as an afterthought: "I have a feeling that the Frisium we gave her in the hospital would help her. Add it on." 

The Hubby noted we don't want any more benzodiazepams in C.'s life and inquired whether Frisium is in that drug category. The doctor conceded that it is - but that "We'll start her on a low dose and raise it very gradually so it shouldn't cause her to be sleepy the way it did in the hospital".

"Sleepy" is a generous term to describe C. in the hospital. As I can't overly stress, what she most closely resembled was semi-comatose.

The doctor claims her goal is to rise to a therapeutic level of Frisium and only then begin to wean her off Vimpat. She left us with instructions on introducing the Frisium. But none for the weaning of Vimpat.

Needless to say, we haven't filled the prescription for Frisium and have booked an appointment with that specialist epileptologist.

It's nearly a week since the visit but no word from this neurologist about her consult with the other neurologist. I didn't really expect her to, though.

Through it all C. has somehow managed to advance her walking to this: here (above) is some evidence from a few nights ago.