Monday, June 16, 2014
Independent Contractor and Seizure Update
This week I began working as a virtual assistant, which is cool since I can work from anywhere I have my PC, tablet, or smart phone. I am finding out; however, that being an independent contractor doesn't necessarily make me very independent. No big deal, really, it's just that the reality of it is a little different from what I expected. To be truthful, I really didn't have a lot of set expectations going into this but the structure of it and adherence to time and schedules surprised me just a bit.
I know it's been a while since I've given a seizure update on Kelsey. She had her regular visit with her neurologist last week and there is not one thing currently available or on the near horizon that will help with seizure control. She has near constant auras and pretty regular seizures (average of about 4-6 per week). We upped her Keppra and if that doesn't make any difference the only other option was to add in the new generation of Trileptal. She's taken that before but honestly I can't remember how well it helped with the seizures. So as of right now she is on Lamictal, Lyrica, Keppra, Vimpat, Lexapro, and Klonopin with Diastat as needed for cluster seizures.
We're still trying to get the disability approved. I can't remember if I mentioned (and I'm too lazy to look through the archives) but we actually got to the point where the disability office sent us for secondary outsourced opinions. Yeah. That. Was. Crap. Just to reiterate, she is followed by one of the top national pediatric neurologists at Texas Children's Hospital Bluebird Clinic for Epilepsy. And for her depression (which is strongly related to the seizures) she is followed by a psychiatrist who specializes in adolescents and adults with seizure disorder.
For review of her seizure disorder, they sent us to a nephrologist. A NEPHROLOGIST. Way out of the league of a neurologist. That's a freaking kidney doctor. And he went through the rote questionnaire -- you know, can she lift 25 pounds, can she walk, blah, blah, blah. Well yeah she can IF SHE'S NOT IN PERIODS OF SEIZURE. I couldn't get that through his thick skull (not sure how much was language barrier or just plain ignorance). When she's not having seizures she's perfectly functional. When we're in periods of seizure, the Tod's paralysis messes with her, the drugs she has to take for cluster seizures knock her out for hours, etc. She cannot adhere to a regular schedule when that happens and it happens frequently. Moron. And then? They sent us to a regular therapist (not even a psychologist) for review of the depression. And again the rote questionnaire -- and the declaration that since the depression isn't relevant to the seizures they couldn't consider that as a secondary condition. Geez. Some days the system just gets to me. I see all kinds of people who abuse the system on a daily basis and my kid can't get what she needs because of all the stupid red tape. I know it will all work out in the end but it's highly irritating right now.
And that's all folks. My virtual assistant position is calling my name right now. :)