Update from May, 11

Doctors at Doernbecher's have been very aggressive with adjusting Claire's seizure medications. Over the weekend they stopped Phosphenytoin, which had been fairly effective but has some nasty long term side effects. They began a drug called Trileptal. This has a similar neurochemical impact on the brain as Phosphenytoin, without the negative effects. It does however take some time to get to a steady state, like keppra, Trileptal has to be stepped up over a few days--as of now she is taking a full dose.

The emergency drug they have been using is Ativan. Doctors have been using it to end very long seizures or seizure clusters. Its has a sedative effect on Claire, where she is too drowsy to even eat. They have put her on a fourth medication called Clonazepam. This will not be a long term medication, again due to long term side effects. This is from the same family of drugs as Ativan, but sometimes does not cause drowsiness. In Claire's case, it doesn't appear too and so far seems to be working. We hope to take her off it too and use it as our emergency drug.

Claire has not had a Seizure since 9:30 last Sunday night. Doctors are drawing down Keppra, which I don't believe has improved Claire's condition any and have pushed doctors to remove it if they can. Our hope is the combination of Phenobarbital and Trileptal are the winning maintenance medications. If she can go the rest of the weak without seizures, we'll be released by the weekend. But since we haven't made it through our three day cycle yet, we are very cautious with our optimism.

Doernbecher's has been very good with supplying us with a plan B. In addition to drug treatment they may try a dietary treatment called Ketogenics if the current plan fails.

Rebecca and I are doing fine. We are still staying at Doernbecher's in Claire's room. I have been working my accounts here in Portland and doing Webinars with remote accounts from one of the hospital's conference rooms. I have to travel next week, but hope we're out of here.

I think we are finally getting some progress. I will keep you posted and ask for your continued prayers.