meeting with epilepsy neruologist

We had our first appointment with Dr. Nespeca this week.  Dave has known him for a few years  and has always spoken very highly of him. Dr. nespeca is a pediatric neurologist and an epilepsy specialist.  We feel very fortunate to get to have him as our dr. for Calvin at this time.

At our appointment he took a very long and detailed medical history of Calvin.  Of course,  he wanted to know every particular about the two seizures we saw and about the pallid episodes Calvin used to have frequently.  He was also concerned about all other medical issues Calvin has had.  He conducted a thorough neuro exam and Calvin was completely cooperative for this which is sort of amazing.  One interesting thing that we saw in the neuro exam is that Calvin has double vision in his right peripheral field.  Sad. The poor boy can never get a break!  We have been seeing a opthomologist for life and we have always known he had some issues with the right eye tracking (strabismus) but I had never known he had double vision. I knew he couldn't see 3D. Anyway, he suggested we go back to the ophthalmologist and get his thoughts on the issue.  No wonder this boy can't play sports! He doesn't have depth perception or peripheral vision! 

Dr. Nespeca showed us the MRI. Dave had seen it in the OR with Dr. Levy (neurosurgeon at Children's)  but I had never seen it.  He showed me the flare they had seen and it really is a SUBTLE finding, but it is there. With a little help, even I can see it.

Calvin had started on the anti epileptic medication in June but was on a very low dose. Dr. Nespeca raised the dose to a more appropriate dosage for Calvin's weight. It will take a few weeks to work up to the therapeutic dose. We will see at that time if it makes any difference in the behavior.

Dr. said that all of the kids who have epilepsy have problems with learning and behavior but the severity varies. Given Calvin's difficulties and placement in school it is clear that he is on the pretty extreme side of the spectrum. Most kids are able to be mainstream or in the district special ed placements whereas calvin has moved to private special ed placement which is more severe.

One interesting thing was in the reading of the EEG. When we went to the EEG Calvin was initially not cooperative. He sat with the electrodes all over his head for a long while but would not go to sleep as he was supposed to. He was agitated and upset and eventually pulled all of the electrodes off of his head.  He went to the bathroom and cooled off and then came back to the exam and was perfectly cooperative.  He was calm and relaxed, eventually fell asleep and then woke up and let the tech complete the exam (shine lights on him, blow a pinwheel, etc).  Anyway, on the initial reading that the neurologist did (not Dr. Nespeca) she reported several spikes in the temporal lobe and some spikes in the frontal lobe.  Dr. Nespeca said that he had looked over the test himself and didn't see any spikes in the frontal lobe, but had seen some activity in the temporal lobe. At our appointment he was going off of his memory of having seen the test a month earlier so he promised that he'd go back and look at the test once more to be sure that he wasn't missing anything.

Later in the evening Dr. Nespeca called Dave on his cell phone to discuss what he had found on his second pass over the EEG. Apparently Dr. Nespeca had only previously looked at the second part of the EEG (where CAlvin was cooperative/sleeping) whereas the other dr. who officially read the EEG had only looked at the first part of the EEG (where Calvin was uncooperative and agitated).   A careful look at both parts of the EEG accounted for the discrepancy between the Dr.'s interpretation of the EEG.  Dr. Nespeca said that in the first portion of the EEG there were a lot of temporal lobe spikes and some frontal lobe spikes as well. The frontal lobe spikes were always preceded by a temporal lobe spike.  During the second portion of the test there were some temporal lobe spikes.

There are some things that are really interesting about this result. #1. Usually the most epileptic activity is seen when falling asleep and  just waking up. That is why the test is sleep deprived. It is unusual to see so much activity while fully awake. #2. It is interesting/unusual that Calvin was having so much activity while agitated.  Does this mean that he has a lot of epileptic activity when he is angry? Does he have "rage seizures?"

The temporal lobe is very near some important structures regulating mood, aggression, self control and of course the frontal lobe contributes to personality as well.  A "temporal lobe epilepsy personality" is well documented as a person with mood problems. 

In epileptic cases, it is actually rare to find definitive answers on the EEG and MRI (less than 1% of epileptic patients). I feel lucky that we do have findings since it helps us to know we are for sure starting to understand what makes Calvin the way he is.  The brain is a mystery. There are few black and white answers. However, with the compelling evidence on the EEG and MRI, we are safe to assume that Calvin has an epileptic brain, his learning and behavior problems are directly related to his epilepsy.

We go back to Dr. Nespeca in 3 months.  We call if we see any other seizures in the meantime.  CAlvin is not suppsed to climb trees or swim without close supervision and he should always wear a helmet on a bike.