This is Evy sleeping. He does that a. l. o. t. now.
Just over a week ago, we had the follow-up appointment with Everett's neurologist. I pretty much thought it would be a routine thing. I would get to complain about how lethargic Evy is on the medication, he would give his recommendation, and then we would go our merry way and see him again in another 3 months. Nope.
We came to find out with the EEG that he was having breakthrough seizure activity on the old medicine ... though overall frequency has lowered.
Because he was still having break through seizure activity on the super strong old medicine (as shown on the EEG), the neurologist is concerned that it indicates a higher chance that his condition is prone to long-term seizure activity. He wants to make sure that the meds Evy has now minimizes activity by 100% . . . with no break through activity. If we do that, then the chance is greater that the gene that is causing this will become dormant.
The old medicine did control the seizures for the most part, but it did not completely control all seizure activity. I think that it may be hard to understand how he could be having seizure activity without any of us realizing it; it helps to remember that Evy's typical seizures were very short absent seizures. Some were short enough for me to not see but were long enough to jar him into falling.
Because the overall number of times he was having seizures has decreased and because the old medicine was really hard on him and is difficult to pair with other medicines designed to control seizures, he was put on a safer medicine that works well if it is necessary to be with others.
The doctor's#1 theory right now is that this is genetic. No, neither Erik or I have oral or written medical histories that anyone in our families had seizures.
So, he is on his new meds for several weeks to get the dosage in his body to a therapeutic level and in mid-May he will have an outpatient EEG to see if an additional medication is needed for 0% seizure activity as detected by the EEG. Robot Man will be in full outfit, once again.
If another medication is needed, we'll put him on it and repeat the EEG after a few more weeks.
Since last week, there were a couple of times when he has fallen and doesn't understand why. I am hoping that in a couple of weeks I no longer see that.
His new medicine makes him very lethargic, slightly cranky and appetite whonky. The doctor said that should diminish in a couple of weeks. So far, that hasn't really happened. We'll go to the playground and all he wants to do is lay down on the ground.
In all, the news could be better, but we are grateful to have better information, a less dangerous medication, the hope that he could still outgrow this, and data that he is having fewer seizures.
At the follow-up appointment, the doctor was an hour and a half late. I had both boys with me, and I was able to entertain them and keep good vibes going. (Granted I was worn out by the time the doctor actually arrived, but it could have been WAY worse.)
As the doctor was leaving the exam room after explaining everything and being questioned by me, he said,"You are really patient."
I about dropped to the floor because PATIENCE would not be, what I would list, in my top 5 virtues. He then went on to explain how I was so patient through the hospitalization and waiting for news and how patient I had been that morning with his tardiness and with managing my boys.
No one ever compliments the mom. It was nice to see that someone noticed the effort I had been putting into the situation.
We ended our follow-up with an unexpected blood draw. Typically, when Evy has a blood draw coming up, we prep. We remind him of how it hasn't been bad before in the lab, we bring a Medic Dino, etc. However, while in the hospital for his video EEG, the technicians went all out and did a full body restraint to take his blood (I think it was completely unnecessary, but they were doing it and the damage had been done before I could intervene). So, hearing blood draw put Everett into full panic mode.
I was tearing eyed when leaving the lab after it all, so choked up I had a hard time hiding it from Everett. The absolute blood curdling screaming that he let loose during the blood draw combined with the new lacklustery news was overwhelming.
No, the seizures do not hurt him. They do, if not controlled, decrease his intellectual capability. And, if they aren't controlled, they may prevent him from overcoming the seizure disorder completely.
For now, we try to keep him feeling upbeat even though he is tired all of the time. We watch for seizure activity. We pray that this plan will be what he needs to fully heal his brain.
***Note: One of the most important lessons I have learned through all this is that the EEG is just a snapshot of the brain's activity. The EEG can be administered and not pick up any seizure activity. But, that just means that while the patient was having the EEG, there was no seizure activity. It does not mean that the patient does not have any seizure activity at all. I wish that the first pediatric neurologist had more clearly explained this to me. This is why we were in the hospital for 3 days with the video EEG; the doctor wanted a longer snapshot to get a more detailed pictures of what was happening. It is not unusual for patients to be in the hospital for up to 10 days with the video EEG, so that the neurologist can get a true sense of the seizure activity.
