Is the Coast Clear?

[Annette Davis]

It's early Saturday morning, my son is now with his father - the one who thinks there is nothing wrong -- and I'm wondering why his dad emailed me last night asking if my son takes his medication. Granted the guy is a jerk, but I'm starting to wonder if my son's behavior is directly related to what hasn't been happening over there -- meaning medication compliance. I'm not trying to rag on the ex here really, but medication compliance with a teen seems to be the central issue for us and may explain what I deem continually odd behavior. By the way, for those who read my page, bless you. You are the friends I need when I feel alone in my "enabled" state -- yes the school nurse thinks I enable my son's epilepsy!

I have a system: 7 a.m. before we leave for school, the kids take their meds, and at 8:00-30 they take the next dose. My daughter is on meds for Bipolar and PTSD so I have my hands full. I will admit I'm not the world's most perfectly organized mom. There are times when I should have been the helicopter mother and watched him swollow, but he's 15.5 and I figured a reminder and a glance as he walked in the kitchen to the medicine box should be enough. Occasionally, when I double-checked after we had left the driveway to school (stupid on my part but I'm usually driving in a stupor),l I'd learn he hadn't taken the Lamictal, or did, but forgot the Depakote. I figured if I scared him by saying something awful like, "Well I hope you don't twitch all day" would scare him enough to remember.

After a while I realized, maybe his bad memory is connected to the E which I'm thinking is connected to the learning disability and the panic attacks. I'm no doctor, but I do wonder. He just can't stay focused. I have to constantly chase him through the house to get ready in the morning. "Andrew where are your shoes. Andrew did you find your backpack. Andrew did you brush your teeth. Andrew go brush your teeth. Please Andrew put your shoes on now." It's exhausting. Am I whining about things that moms all go through, or am I truly seeing something that is a result of medication compliance or just plain medication side-effects. I can't tell anymore. Is it a normal teen who can't remember where his puts things, can't remember he has homework, can't remember to feed the dog, can't remember to ask the teacher a question for mom, can remember to take his meds. He readily admits, "Mom I have a lousy memory. I just can't remember stuff." He says it seriously, and thus I take it as such.

His grades are awful as he fails most tests because he can't remember the information. But I digress. Andrew's med compliance which is 95% of the time should yield protection from the absence seizures he suffers I'd think, but I'm not certain that he is taking enough to protect him from this. The teachers haven't reported anything, but they are too busy to watch my son all day. Absence seizures can be insidious. A 2-3 second seizure would go unnoticed to the untrained eye. Sometimes while he is doing something, I'll watch him to see if he is having one. The twitches are easy. He remembers the big one because they scare him, and tells me. He seems to still have the little ones fairly often to the point where they are "normal" for him. This isn't good.

So we are heading back to the neuro for another EEG. We now have two new neuros (they take turns with the patients). The other just up and left the practice. I feel like we're back to square one explaining everything and hoping that we get the right care. I should be thankful though. Andrew hasn't had a TC since January. So I shouldn't complain about what I guess is a less than serious case of E, but it is our case and it does worry me. Thanks for listening to me, whoever you are, and bless you on your journey through E.

[Scott Edington]

Hi Annette, I deal with the same type of seizures, simple partial seizures of the RT temporal lobe. He's not kidding with it effecting his memory, it is a constant struggle, but just because he has memory problems there will be other areas that he may become more gifted at. It's kind of like a blind person paying more attention to hearing then those who can see. When I became more aware of my memory disadvantage, I begain to pay more attention when others would not. Also the left side of the brain controls more of the speaking/vocabulary side, and my interaction became better and the ability to communicate, some say other areas can become stronger, maybe gifted in other areas. I ended up getting my seizures when I turned 30yrs old, so my memory was better while going to school. Another thing I noticed is you refering to the E, let Andrew know that there are a lot of others out there with the same struggle and for him not to be ashamed of having epilepsy. Also overtime he will become more organized it's all apart of adaptation. The more projects he works on or staying busy around the house will make him better at focusing and adapting to our disadvantage. Usually having deadlines getting tasks done quickly forces him to concentrate as well. Usually if it's a slow project you wonder around aimlessly looking for things and to it will help him to compete with the work force when he gets older. I'm not going to lie it is a struggle with the short term memory. When I was going to college I had to study hard and repetitively, but by doing so I seemed to remember it longer then the rest of the students for the future classes. About the meds, don't put too much emphasis on them, kind of take them like a flintstone vitamin. I used to let them effect my everyday lifestyle thinking about having to take them, then I went into the hospital so they could do a two week test, they took me off my meds and nothing was happening. This was a test to bring me into a seizure and I thought for sure I would start getting the partials right away, but I didn't. I still get the weird awful auras the partials on the meds, they have tapered off a quite a bit, but my hospital test made me realize that a missed dose won't effect me like I thought it would, not promoting it just a FYI to decrease added anxiety...You gy's take care and God bless you!