Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Zalonton early observations

Tue, 05/02/2017 - 16:10
I put this post, minus today's update, in a different section before realizing I should have put it here in the meds discussion. Forgive the sort of double post (this one includes today). My 12-year-old started Zarontin on Friday morning for juvenile absence epilepsy, so he's on day 5 of beginning meds. The plan is 10 days of a once-daily dose, then begin twice-daily. I know it is VERY early in the process, and it takes time for the meds to build up to a steady state, never mind he's not even at full dose yet. The thing is, it might be tough to know for sure if it's working, because as it is we've only ever observed a few obvious absence seizures over the past few months. The last one that we knew of for sure was when someone else observed one 12 days ago. We hadn't see once since. Of course, it doesn't mean he hasn't had others that no one saw. He said he doesn't think so, and honestly he usually is aware when he had one (although I'm not sure if that's only because of people's reactions). Last night he might have had another, but it's hard to tell. I was quizzing him for a particularly tough definitions test. When I gave a definition for one word that he didn't remember, he was trying to think of the answer, and then it might have happened. It was a bit harder than usual to tell. The episode seemed even shorter than usual ones (others were maybe 5-7 seconds tops), and the “entry/exit” points were less distinct in that I couldn't tell exactly when it started and stopped. In fact, I wasn't even sure if he was just thinking or zoned out. He didn't look as out of it as usual. I asked hi about it, and he did think it was a “zone out.” When asked if he heard me (I'd been repeating the definition in a different way), he said yes but said he usually does hear people through a sort of fog (I didn’t know that). So I was bummed he might have had one because I personally hadn't seen him have one in so long even before he started the meds. Anyway, it seemed milder, but I don't know if milder is possible. Then there's today. Just a short while ago he had a more clear-cut absence seizure. Very clear when he stopped talking mid-sentence, didn't respond for several seconds, then "came back" and was momentarily confused as if he's lost his train of thought. It might even have been a bit longer than any previous ones we'd seen but it's hard to tell. I've never seen him have an absence seizure two days in a row. Doesn't mean he hasn't had them. But I've never seen that. As I mentioned, I hadn't even seen one in a couple of weeks, with the last known one before his diagnosis being about 1.5 weeks ago. As I said, I know it's way too early and way too low a dose for me to be expecting results. But it's also disheartening to see more episodes than before he started the meds. Even though I know he might have been having more without our knowledge.

Comments

There is no perfect place to

Submitted by just_joe on Tue, 2017-05-02 - 23:46
There is no perfect place to post. Parents with kids section, medications section or any of them. Most of us do look at new posts and answer them. Yes it takes time for medications to build in his body. But that does not mean it isn't working. The time is for his BODY to get used to the medication and the THERAPEUTIC LEVELS TO BUILD. You see there is a difference. It can be working and still not be at the therapeutic levels the doctor wants with that dosage. Now You are checking him for this or that to see if he is having seizures. If you are can you say the number of his seizures is reduced or he is having more since you recently started noticed his seizures. Have you researched like you were told? Or are you becoming a mother hen that does not know what to do except to constantly worry and wonder if he is having a seizure. Remember some absence seizures are split seconds long. His delay in his answer could have been several different things. He could have rethought the question and come up with the right answer or the answer he thought was right. Or he could have been thinking of words the wanted to use and changed some of them. Unless you know more then you do now and even doctors can not see all the split second seizures then you will constantly worry which doesn't help you or him. Please wait seizure medications start working the first day they are started. BUT knowing he is having them and constantly questioning him will not make the medication work faster. Nor will questioning if it is working when the next dosage increase is started. Remember finding and researching things can be good and it can be bad. Listening to the doctors and following their instructions is good. Di aspirins work when you take them? Do cough medications work when they are taken. What about that cough after the cough medication has been taken?? Did the medication work? Or did it work and you need to take the next dosage because it is out of your system now? You see there are ways to think. One is constantly research and questioning. the other is using common sense and following instructions. The latter may sound weird but it too works with much less stress. He can see your stress. Just like I saw my Mothers stress. But back then research wasn't at a finger tip. You learned by experiencing seizures and how to help someone in one. Believe me Mom learned and everybody else in the family did.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.