Second EEG

Rayleigh had her second EEG Tuesday, October 12, 2010. She is 6 months old. The goal was to see if the brain activity has changed when not seizing and if she does seize during the test, where it is coming from.

Rayleigh finishing her EEG

We go to a small, cool, dim room with a bed and one chair. I lay on the bed with Rayleigh while Michael sits in the chair next to us. We quickly soothe Rayleigh to sleep and the EEG technician comes in and begins sticking the receptors to Rayleigh's head. She has a note that she needs to do it quickly because the patient (Rayleigh) seizes within the first 20 minutes of sleep.

We were conflicted. We absolutely do not ever want Rayleigh to have a seizure. But if she was going to that day, during the test would be the time to do it so Dr. Coleman could get a better idea of what is going on.

She had a seizure during the test.

Rayleigh slept for the first part of the test, woke up about 10 minutes into the test and had a 37 second seizure. Stayed awake for a little bit after and then went back to sleep. Once she was back asleep the technician came back in and did the strobe light section of the EEG. Rayleigh did not react to the strobe light at all.

The technician said that the test went very well, got all the information they needed from her asleep, seizure and awake sections. After the EEG we went over to Dr. Coleman's office so he could go over the results with us.

Dr. Coleman said that she is not having focal seizures. Focal seizures is when the brain activity is abnormal on one side of the brain. He thought maybe that is why she used to always turn her head and eyes to the right when she had a seizure, something she no longer does on medicine. He said that the seizure activity happened on both sides in the frontal lobes of her brain.

She is now having Tonic seizures as he explained. Before getting on anti-convulsant medicines she was having tonic-clonic generalized seizures. The Tonic part of a seizure is the initial muscle lock up and tense. Clonic is the twitching or jerking of the tensed muscles.

Dr. Coleman told us that tonic seizures are generally harder to control with anti-convulsant medicine. Tonic seizures can still be grown out of but it is not as likely as the tonic-clonic seizure. Dr. Coleman said that the harder the seizures are to control, the less likely they will grow out of them. This was a huge hit to Michael and I.

New course of action is to try a combination of medicines. Her Phenobarbital + Keppra. Yes, we are going back to Keppra to see if maybe it will work when combined with the current prescription. She is taking Keppra twice a day, 1.4ml each time and then 14ml of Phenobarbital at night. If this combination works we will slowly start weaning the Phenobarbital back so that she is at a lower dose of it along with the Keppra. Keppra is much more concentrated than Phenobarb so you don't take as much of it.

We are supposed to give this combination a couple weeks to see results. So far, it worked well for the first couple days. She went from 2 seizures a day to 1 a day. Yesterday she had 2 seizures though. Today, she has taken 2 naps and has not yet had a seizure with either one. This is a good sign, but can't get too hopeful yet.

If we don't start seeing results in a couple weeks we will either see a metabolic specialist to try and find an underlying cause that can be treated OR we'll see a nutritionist about the Ketogenic Diet.

Right now, worse case scenario is that she continues to have a couple seizures a day, with the medicine controlling all but those couple, for the rest of her life. But we can't think about that now, we still have a lot of options to go through before we get to worse-case scenarios.