Last week we took Logan back to the neurologist.
His doctor wanted to check on him and see how he was adjusting to his new prescription of Lamictal. Lamictal is the medication that took twelve weeks to slowly titrate him onto. When he finally hit his goal of 100mg 2x a day, though, he was still having seizures. So the doctor upped it to 150mg 2x a day. This was in addition to the 900mg 2x a day of Trileptal he has been on since his second seizure back in January of 2017.
At the appointment his doctor, who is an amazing deaf woman with the ability to read lips like nobody's business (although I signed throughout the appointment, because it felt rude not to since I have the ability) she patiently answered all my questions and we made some good decisions about Logan's future care.
To sum up what I learned:
Logan has both focal (starts in one place)
and generalized (starts over the whole brain at once) seizures.
His grand mal seizures (the ones where he shakes and falls down, like the one at school and the one in the hallway at home) that first lead to his epilepsy diagnosis back in 3rd grade (fall 2016/winter 2017) are focal (or starting in one place in the brain).
His absent seizures (the ones where he has an aura beforehand and stares off into the distance while smacking his lips) could be generalized or focal, and that's why we're having a hard time controlling them. Watching them more closely, and catching them on video (like I did last Sunday) will help his doctor better diagnose his type of epilepsy and choose the best medication for Logan, should the Lamictal not work.
The absent seizures that are generalized are more likely to be outgrown whereas the absent seizures that are partial complex seizures are focal and less likely to be outgrown. During an absent seizure that is focal (starting in one place in the brain) you will have an aura (sense that it is coming) beforehand (which Logan almost always does) but your eyes tend to go to the side, or roll back in your head, which Logan's do not. He always stares straight ahead during his seizures.
During an absent seizure that is generalized (starts all over the brain at once) you don't usually have an aura beforehand, and your eyes are straight forward (like Logan's always are). You also tend to come to quickly afterwards. Needless to say, his symptoms are pretty confusing!
Unfortunately for Logan, I feel pretty confident that his are partial complex seizures because of how strong his auras are, which means he's less likely to outgrow them. (Josh, my husband, also has epilepsy that he hasn't outgrown, which is another reason I assume Logan has this type of epilepsy.)
Further hits to the head (in the course of a "normal" ten year old day) will not make his epilepsy worse. Only Traumatic Brain Injury or brain bleeds will do that. So I can stop freaking out. As long as I keep him safe while in the water (bathing or swimming); don't let him climb too high (we don't want him having a seizure while he's up twenty feet in a tree); and make sure he always wears a helmet, he should be good to go.
Some seizures can be preceded by intense physical activity as it seems Logan's have been. However, our goal is to reach a medical point where his epilepsy medication controls the seizures so he can do whatever physical activity he wants without restriction.
We ended the appointment deciding to wean Logan off his Trileptal because it is only for focal, not generalized seizures and in fact, it can increase generalized seizures. So he's currently down to 600mg 2x a day and next week we will go down to 300mg 2x a day. By mid July he will be off Trileptal completely. Our prayer is that we will see his seizures disappear after weaning him off this medication that is no longer appropriate now that his epilepsy has evolved from one type to another.
His technical diagnosis is Primary Generalized Epilepsy, which is basically a really general term for what he has, and isn't descriptive at all. It just says, "this kid has seizures."
His EEG shows broad based sharp waves in the left central region, so that's where his focal slowing (slowing in one area) is. His generalized slowing occurs both when he hyperventilates and when he is exposed to flashing lights, as well as when he is sleeping.
Because of this, our family has had to skip the new Incredibles movie, which has some really severe flashing scenes that have caused seizures throughout the epilepsy community. Super sad, but not worth the risk to our boy.
We left the doctor with instructions to call back in one month and let her know how it's going. If it's going well, we will continue with just the Lamictal. But if it's going poorly, we may wean him off the Lamictal and try a different medication for his two types of epilepsy. Time will tell.
I am grateful for you all, not only for your love & prayers, but for letting this blog be a safe place for me to work out my feelings as a mama. It's been a really hard six months with Logan & Wyatt both needing more medically than they ever have before and I'm so thankful that whenever I post anything about Logan's seizures (or Wyatt's asthma), I am met with nothing but love and support. You are all amazing and I'm so thankful.