New drug and new therapy
Maria’s over her latest sleeping incident. Sunday she started eating and drinking better and by Monday she was back to normal. I guess we need to accept that this is a Maria thing. She has done this several times. For 7-10 days she sleeps continuously, doesn’t eat or drink much, and runs a mild fever of about 100. Then she gets over it. Our hope is that it’s some kind of growth spurt, either body or brain. When I picked her up this morning, my immediate thought was “Geez, she’s HUGE”. According to Cathy’s bathroom scale, Maria’s over 30 pounds when she was around 27 a couple of weeks ago.
She started Depakane this week (Depakote is the pill and Depakane is the liquid). She will still take the Trileptal in addition; we aren’t sure if the plan is to wean her off the Trileptal once the Depakane is at full strength in a few weeks. By then we hope to be with a new neurologist so we’ll see what he has to say. Since she’s having 40-70 seizures a day, we really hope the Depakane helps. We are of course concerned about the potential for liver damage, but the chance of it is very low. Other than the usual side effects of just about any drug (sleepiness, nausea, headaches) we need to be sure to keep her out of the sun since Depakane makes the skin very sensitive to sunburn. Oh, and since it causes terrible birth defects, we need to be sure Maria doesn’t get pregnant 
Cathy talked to the new feeding therapist about the VitalStim, the electrical stimulation of her throat muscles that they want to do in November. It is done four days a week for five weeks and is, of course, in the morning when school is. So either Maria misses school for five weeks or Cathy gets her over there early enough that she can drop her off at school afterward. They may be able to find a different therapist who gives the treatment in the afternoons. Regardless, it’s likely we’ll have to cancel all of her other therapies during this time. It’s going to be a mess, but the success rate is in the 90-100% range which is encouraging.
A representative from the DDD was cautioning Cathy that Maria will lose benefits when she turns six unless she has one of epilepsy, cerebral palsy, cognitive disability, or autism. It looks like we “win” because Maria has three of the four (I don’t think we mentioned that the pediatrician has started writing “cerebral palsy” on her office notes so I guess it’s official now).