Update # 5

We saw Ms. Tyroch, RN, MSN yesterday along with Dr. Crisp. The results of Zane's sleep deprived EEG came back normal. Which means they were not able to determine whether his seizures are generalized (starting from both hemispheres of the brain) or focal (starting from part of one hemisphere). This is information they would like to have, if possible, before prescribing medication. Apparently there are meds that work for either type but there are also meds that work better for focal seizures, so they like to use those if that is the case. Fortunately, Dr. Crisp would like to do more tests before starting treatment. Zane will be going in for another EEG. This time it will be video taped and will run about 4 hours long. Again he will be sleep deprived and hopefully he will sleep for much of the test. Although, I believe they will want him awake at the beginning and the end of the test because they are going to run some flashing lights at those times. The purpose of video taping it is so they can see what Zane is doing physically while watching what his brain is doing. The doctor also mentioned Zane having a MRI eventually, but they want to do this EEG first.

We got a really good feeling from Ms. Tyroch and Dr. Crisp. They were very nice, thorough and gave us plenty of time to ask questions. We spent more than an hour discussing everything with them.We will always be dealing with them as Dr. Crisp is the only Pediatric Neurologist in the clinic. They said Zane could continue with his normal activities. We can move forward with vacation plans, etc. Their only concern is that he shouldn't be climbing or swimming by himself (which he doesn't do anyways) because of the risks involved should he have a seizure while doing those things. Basically we need to keep his feet on the ground. They also gave us a prescription for Diastat Gel which we can administer to Zane rectally if he has a seizure that lasts more than 5 minutes. It will stop the seizure and he will fall asleep.

It sounds as though treating with medication is inevitable. Since Zane had the second seizure it greatly increases his odds of having more seizures. The nurse mentioned possibly medicating for 1-2 years then taking him off the meds to see what happens. If they don't find any new information with the second EEG then they will treat as though the seizures are generalized. The doctor assured us that there are a lot of new medications available that are as effective as older meds but are much better in terms of side effects. So now we wait for the call to schedule the video EEG (it has to be approved by the insurance company first) and then we will go back 1-2 weeks later to discuss the results and treatment.