a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Saturday, January 19, 2013

Another Seizure and EEG

It's been about a month now (the week before Christmas) since Oia had her first seizure. Per the guidance of the neurology team, we began giving Oia the anti-seizure med, Trileptal, at that time. Within the first week of administering the medicine, we stopped it. The week on the medicine was crazy, for the lack of better description. Oia was more inattentive than usual and extremely busy. It was an exhausting and frustrating week. She was literally all over the place and lacked complete focus. The very behavior we are trying to calm was intensified during the week on Trileptal. Also that week and even prior to it, we were dealing with a mystery rash as well that had no cease in itch despite the topical ointments and oral Benedryl we were giving her around the clock. Perhaps the meds used to treat the rash were having adverse side effects with the seizure med but we just said enough is enough. We carried on seizure med-free from there, willing to take our chances.

An EEG was scheduled for last Thursday, the 17th. It was to be a sleep-deprived read so we were instructed to wake the Miss at 4am for her 8am appointment. Since this momma bear doesn't do mornings well, I was a little late and woke her around 4:30am instead. I gently picked her up and carried her groggy self downstairs where I had planned for us to snuggle on the couch, by the fire, and share an early breakfast of donuts and milk. But in less than 5 minutes of us being out of bed, Oia began seizing.

I quickly carried her back upstairs and woke Rob. I held her, comforted her, rocked her, and waited. Rob recorded the bulk of her seizure to share with our neurologist. Two minutes felt like 30. No need for diastat this time. She fell asleep immediately after it passed, waking on and off for the next hour or so. I watched her like a hawk.

We made it to our 8am appointment. And as we suspected, Oia screamed bloody murder for nearly all of the EEG process. Rob had to lie over her top half and I over her legs to keep her down and somewhat still for the technician to adhere the wires to her head. Her screams lulled to just a cry for the 20 minutes it took to do the read, all of which Rob and I still had to hold her down for. We make a good team but it's a wonder she still loves us. I know she doesn't always understand why we must do the things we do, to her and for her.

Our neurology appointment this Wednesday, the 23rd, will be important. I'm anxious to gain insight on what's happening inside that sweet head of hers now. What's changed? Why the seizures now? What must we do from here? For now, we have resumed the Trileptal for take 2. With no mystery rash and other meds on board, we are hoping that we will not experience a repeat of the adverse side effects this time (increase in hyper-activity) and that this med will be our ticket in keeping these nasty seizures far, far away. For good. One can only hope.


  1. Sorry to hear that Oia had another seizure. I hope the EEG results can give you some answers as to what is going on in that beautiful head of hers.
    I have heard that Trileptal(oxcarbazepine) is the same medication as Tegretol (except with oxygen (carbamazepine) and that they can have some nasty side effects like you have mentioned. Have they talked about Epilim (Sodium Valporate)? My daugther has tolerated this one really well.

    Good luck!

  2. Good luck on Wednesday. I'll be anxiously awaiting an update.

  3. Sorry to hear that. What about Dilantin (phenytoin)? From what I've seen and heard, it tends to be better tolerated than most seizure meds.

  4. I am sorry to hear about this. I do hate seizures. We have them too, so I know how stressful and scary the whole thing is. I also know how hard it is to deal with the meds and the side effects. I also know and hate the mental torture that we, as parents, put ourselves through trying to figure out why the seizure occur in the first place. Exhausting! I will say some extra prayers for you all, especially sweet Oia tonight.

  5. We love Keppra for Leo. No nasty side effects at all so far, and hes taken it since he was 4mo old. Although nows hes 2.5 yrs they had to add depakote. which also works well and no side effects except some extra liver supplement. I'm so sorry that you have to add seizures to your list of worries for your sweet girl. There are many of us who share that worry with you. :-( Leo's are so bad he ends up in status every time. (our saving grace is the meds keeps them very infrequent) I hope that the EEG is helpful. Leo had a 48 hr one that seemed to do the trick in showing where/when his seizures where sparking. But yeah, getting it on and off took years off my life. Prayers for your family.

  6. P.S I have nominated you for a Leibster Award...Check out http://www.princessmissymoo.blogspot.com.au/2013/01/liebster-award-special-needs-edition.html to find out more!
    Love reading your blog x

  7. Sweet Mo and family -
    So very sorry to read that the nightmare you've dreaded for so long has reared its ugly head. But as expected, you've handled it like a pro - you are my hero - and I've no doubt you are Oia's. I pray your doctor's visit today gives you the answers and antidotes you need. I have no doubt that the very determined Oia and her very steadfast mother and father will clear this newest hurdle in that sweet girl's path.
    Love you!