10.23.13 Absence Seizures

Yesterday we met with Aimee's neurologist. We left the appointment with very mixed feelings. On the positive side, I came prepared to argue for trying out the ketogenic diet to control seizures and   eventually phase out some meds. Without much argument, the doctor agreed that Aimee could be a good candidate, but informed us that there is currently no room for new patients in the program. Disappointing. However, as I was concerned about Aimee's mood changes, he allowed us to decrease her dose on the least essential med. Assuming that she stays stable, we could even consider reducing it further. Very encouraging. 

While we were there, he reviewed with us the original EEG results and we discussed what her known seizures look like to us. He said that the test had shown spikes every 3/4 of a second all over her brain, but most often in the front. The results showed her at risk for multiple types of seizures, especially absence seizures. He brought it back up to us because while he was examining her, he felt that she had an absence seizure. Bad news. 

From here we need to track these episodes and when we return in a few months we will decide if an inpatient test is needed. The episode that he thought was a seizure looked like Aimee spacing out, which she definitely does do frequently. I couldn't say how often... I always assumed it was boredom or just a side effect of her overall condition. We are trying to process how we can even keep track of these types of seizures to know what the patterns look like and at what frequency they occur.

Unfortunately, in the midst of these conversations, it appears that Aimee has picked up another bug! This afternoon she has gradually shown more symptoms. Her breathing has become more congested and labored. Yet again our focus shifts to the basics.