Jenelle's Journey

I'm starting to have a love-hate relationship with Jenelle's Neurologist, and I'm never going to send another update saying Jenelle hasn't had a seizure, because I definitely jinx it! Jenelle continues to have more seizures and remains on a lower dose of Pheno and the same Vigabatrin dosage. Brett and I think that the Vigabatrin is probably helping her spasms, but not the myoclonic type seizures that we are seeing.

The day before Thanksgiving just before 5:00p.m., Dr. Phillips called Brett to tell him some of Jenelle's metabolic tests were back and he wanted to run some new tests. We couldn't get to the office in time to pick up the lab work, so he said he'd just mail it. Of course, I didn't take the call and had tons more questions - which I knew I'd worry about over Thanksgiving! I spoke to Dr. Phillips today and he said that one of Jenelle's tests from he last hospital stay came back indicating an elevation in the level of some hormone. Apparently this was different from a test previously run a month earlier, so he wanted to re-test her. Fortunately, the test is only urine, but the results could take 8 weeks. When we talked, I explained that Jenelle was still having seizures, and he said to increase her Phenobarb. Because we want Jenelle off the Phenobarb so we can give the Vigabatrin a chance, I choose to ignore this instruction. Jenelle's seizures remain constant, and are not increasing, so we'll stay the course. We see Dr. Phillips again on December 19.