My wife's latest meeting with her neuro

Bernard

Your Host
Administrator
Benefactor
Messages
6,624
Reaction score
82
Points
203
Years ago, I used to post frequent updates about how my wife was doing and what she was doing with regards to her seizures. I haven't talked about it in a long time mostly because there wasn't anything really interesting to share.

She is currently taking 3 meds - ONFI/clobazam, Aptiom and Briviact. The ONFI seems to have helped her lock down the tonic clonic seizures. I think she's only had one of those in the last year. The Briviact and Aptiom combo have been slowing down the frequency of her other seizures (and balancing her moods). She only had two complex partial seizures in the last 3 months and for her, that's pretty awesome given her seizure activity over the preceding year or so.

Even though it looks like her seizure activity is improving (fewer seizures between neuro visits), her neuro isn't satisfied. She is determined to push new things until Stacy achieves zero seizures.

She was pushing us to try the VNS, but that didn't make any sense to me given circumstances. I told her about Stacy's breathing at night and how I suspected she might have sleep apnea (which is a good reason not to get a VNS). So she ordered a sleep study to monitor her for sleep apnea. Stacy did the study and they did find that she has a mild case of it. So the neuro dropped the push for a VNS.

The neuro went back through my wife's medical file and found a report from a previous vEEG testing where the report mentioned that my wife's seizure activity in the brain (not necessarily full blown seizures) had some characteristics of Dravets Syndrome. She wasn't formally diagnosed with it because she doesn't fit the pattern for it. In any event, the neuro thinks the report might provide sufficient support for getting our insurance to cover a Rx for Epidiolex which is only FDA approved for two specific types of epilepsy (including Dravets). We're waiting to hear back on that.

We've had a long journey through dark times with uncontrolled seizure activity and seem to now be a fairly good place with the trend moving in the right direction.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,825
Reaction score
262
Points
193
Great to hear that Stacy's epilepsy is pretty stable! Good news for you and your family.

Nice, too, that her neuro is proactive (though a little concerning that you had to push back against the VNS). I hope the epidiolex turns out to be a plus.
 

CQ:)

Veteran
Messages
4,187
Reaction score
158
Points
178
Thats great to hear that Stacys epilepsys under control at the moment.

I'm due to see my neuro on Monday for teleconference appt, so I'll see if he'll be happy as my seizures are the lowest they've been averaging 1 a month and my headaches have been OK.
 

cadsgj

Stalwart
Messages
395
Reaction score
6
Points
68
Very nice to read this about your wife; major thumbs up. Fingers crossed and prayer things with her get even better!
 
Messages
20
Reaction score
8
Points
3
I started Onfi recently and it has helped tremendously with my seizures. I’m also on briviact with Lamictal as well.
Two thumbs up for Onfi from me.
 
Top