The good news is that Josephine has not had any seizures during our visit. However, Dr. Bojko said she is having significant spiking in her brain activity, particularly while sleeping. The average brain should have no spike in brain activity. This means Josephine is prone to seizures and is something we need to monitor on a regular basis. No medication is needed at this time, which is great because she is continuing to make progress in therapy and the meds could slow her down again.
We will have to do an ambulatory EEG again in 3 months, just to make sure the spiking hasn’t gotten any worse.
After Josephine finished her dinner and was relaxing with some playtime, she spit up a small amount of dinner. No big deal. Then she followed up with throwing up about 2 tablespoons of her dinner. So, I called the nurse to alert them of the unusual behavior. While the nurse was in the room, Josephine threw up another 2 tablespoons of food. After the nurse left to room to get someone to change her sheets, Josephine rolled her eyes up in her head for about 1/2 a second. Then she was fine. We decided to mark that as possible seizure activity and hope to find out more information once the EEG is read in the morning.
Well, Friday started out as any old day and then dinner came along. We all sat down for a relaxing meal and noticed Josephine started moving her head left to right in a repetitive motion. My mom noticed Josephine had been looking at the dining room light just before the movements. We waited and observed for about 15 minutes and saw the same thing occur again. And again. After brief discussion, we decided to call the neurologist, Dr. Bojko, to alert her of the situation.
The on-call doc told us to take Josephine to the ER, which we did without too much panic. We didn’t want Little Sheldon to worry.
The ER staff was amazing! They whisked us in quickly and we were seen by the attending pediatrician within 20 minutes. After consultation with Dr. Bojko, Josephine was admitted for another EEG test. The difference is this time the doctors will monitor her with a video camera so the movements can be captured on camera as well on electronically on the EEG machine. Updates to follow…
After a great amount of waiting patiently and many phone calls to the neurologist, we have some new information regarding Josephine’s brain.
MRI RESULTS: As we suspected, Josephine has complete agenesis of the corpus callosum. What does this mean? No idea. It depends who you ask and what research you do on what site. What we do know is the connective tissue/fibers between the left and right brain is nonexistent. Normally developed within the first 6-12 weeks of conception, the corpus callosum allows the right and left brain to communicate through as many as 200 million fibers. There is another pathway this communication can occur, but there are only 50,000 fibers available in that connection. Check out www.nodcc.org for more detailed information on disorders of the corpus callosum. Again, what does this mean for Josephine? She may need more therapy to help build new ways for the left and right brain to communicate. The good news is that we have started Early Intervention already, so only improvements can be made.
AMBULATORY EEG RESULTS: These results are less severe than the MRI, but still concerning. Josephine has a tendency toward seizures, but did not experience a full blown seizure while hooked up to the EEG. The neurologist, Dr. Aviva Bojko, is not prescribing any medication at this time because the EEG just showed spikes in the activity in the right and left frontal portions of the brain. If we see any signs of seizures such as blank staring and twitching of any kind, we are asked to call the Dr. Bojko immediately. Are these seizures connected to the agenesis? Your answers are as good as ours. I read that seizures are increased with complete agenesis and when having conversations with other medical professionals (a P.A. and a nutritionist), if there is no corpus callosum, seizure activity should cease. More conflicting information…no surprise here.