Medication Roulette...June 14

Once again we spin the medication roulette wheel. At this point, we feel like we have as much chance of winning the lottery as we do landing on a drug treatment that will cool Claire's seizures. We've already gone through so many.

Now we are going to try a diuretic called Zonegran. Claire will be peeing even more than she does already. Let me give you a sense for how this works. There are many, many anticonvulsants. And it’s not because pharmaceuticals are aggressively seeking a cure for Epilepsy. Actually, the pharmaceuticals are more likely looking for an antidepressant, diuretic, or some other treatment, but a side effect is as an anticonvulsant.

We do have some good news to report. The withdrawal from the Ketogenic diet has lead to Claire gaining weight again and having regular BMs. We have also ended the drug treatment Trileptal after a two week weaning. The vitamin treatments also appear to have failed, so we will be withdrawing those as well.

There is still no diagnosis for the cause of Claire's Seizures. So we have asked the doctors to be aggressive with genetic testing. I don't hold high hopes for getting a result. But having the tests done now may prove beneficial in the future.

As always, we ask for your prayer. We are desperately seeking a treatment that will allow us to get home. Claire has returned to this cycle of 36 good hours followed by 48 bad hours. We can anticipate Claire's bad days, but have yet to find a rescue medication other than Ativan. We hesitate using it for too long, because she is already growing a resistance to it.

Pray for a treatment that keeps us from having to use rescue meds. Pray for us to get home soon. The hospital is wearing thin as a place of residence.