I looked through you, dear blog, like a number of things this passing year, I did not do so well with you. Yes, I just did not do well. And I will not bore you with excuses.
The last time I stopped by, I told you how weak a person I am (or should I say was?), how I failed to be strong when I needed to be. But you won’t believe how much I have grown, evolved, blossomed into that strong person people think I am.
Since after that “episode” that I talked about when I stopped by, we have experienced two more. On each occasion I was strength personified, (you don’t believe that, do you?) Yes, I did not give the relaxant like mummy ER suggested. The first one resolved in 5 minutes (I had put on the stop watch the moment I noticed her about to convulse) That was on the 26th of July, two weeks after the last episode, about 2 am, she immediately went back to sleep and slept till about 8 am when I came back from church. It was a Sunday, I attended mass without her, first time ever, as I did not want to wake her for the 6 am mass.
Three weeks later, we experienced another one! At about the same time. I was quite awake and observed that she was going to convulse, and she did. I watched her seizure it…………….yes, with my heart in my mouth. After 5 minutes and it was not resolving, I decided to give her the relaxant (Buccolam). I reached for it, (it’s hardly ever far from us), but something said to wait a few more minutes. I waited, on the 7th minute, it stopped. I called her name, she looked at me, put her head down and drifted to sleep. You guessed right dear, it was end of sleep for me. What could have triggered it. Or rather what is triggering the seizures? What am I not doing right?
We had had 7 months period free of grand mal seizure before the 4th of June episode followed by these three, almost in quick succession. The June 4th I could attribute to stress and lack of proper sleep , we were on a long journey, it actually happened on air. But these last three…. could it be weather, it was rainy period. I decided to dress her up warmer, particularly at night. I do not know if it helped, but it’s been almost 5 months and we are yet to experience an episode.
Now you must be wondering why I am (now) slow at at giving the relaxants at the onset of a seizure; For a number of reasons some of which you may not agree with.
One of the first questions the doctors ask each time you say your child had a seizure in between appointments is how long the seizure lasted. Since my “happenstance” knowledge of rectal diazepam, I never am able to answer that question as I usually would give treatment the moment I notice the seizure coming. Somehow, I feel it is important to know how “well the brain is doing in self calming those abnormal overactivity in it” when it occurs. So now I can say one lasted 5 minutes, the other 7 minutes. For a child that used to have seizures that last as long as 30 minutes or more, that does not seem to be too bad.
The relaxants keep her “woozy”, sort of “not with you”, days after the episodes, another reason I do not like to give. And did I say that my mind is on taking her off the AEDs… yes, the side effects, not as if they cure the seizures or treat why they started. I would rather treat the why, I plan on finding out how. Sure will let you.
It’s the last day of 2015, I waited till this day to write this our update on seizure as you know that seizure is one of the “accompaniments” of Ziim’s CP that gives me a lot of concern. I will like to know how we faired, what I need to do and how.
I will not beat myself so hard by saying we did not do too well all things considered. The daily early morning twitching reduced considerably. I think I know where I need to focus on…. Mind on diet.
It was not a bad year seizure wise though I would rather it had been seizure free…..*sighing****