Howdy

[ladyvonkulp]

Hi, new here. I have t/c seizures, maybe once every couple months. My kids are 2 and 5, and the elder one has seen a number of them in the past few months. I think he is getting old enough to have an action plan of what to do if he sees me have one at home, even if it's just 'speed dial Daddy and tell him what happened.' Is anyone here a parent with epilepsy, and do you have an action plan for your young kids?

[skillefer]

Hi ladyvonkulp! Welcome to the forum. An action plan sounds like a really good idea. I don't have kids at home, but I am a schoolteacher, and my students have seen me have them. I find that they react better to them when they know that there is a specific task they need to do. But then again, I work with bigger kids. There are some other parents on the forum who may have a better idea. But it sounds good to me.

[RobinN]

Hi ladyvonkulp - Welcome to CWE.
I think you are teaching your little guy some wonderful life lessons. I think the local paramedics should give him a special badge. He sure deserves it.
My daughter also has t/c seizures. Hers usually happen at school, so they are the ones that have the action plan. I am happy with it so far.

[Birdbomb]

My 7 yr old knows to get help or dial 911. She doesn't rememer seeing me seize but we have talked about it. I have a friend next door who is a brittle diabetic and we have the EMT's at his house about once a month so she has the general idea.

[ladyvonkulp]

Hi ladyvonkulp - Welcome to CWE.
I think you are teaching your little guy some wonderful life lessons. I think the local paramedics should give him a special badge. He sure deserves it.
My daughter also has t/c seizures. Hers usually happen at school, so they are the ones that have the action plan. I am happy with it so far.

One of the more recent times he watched me seize, I regained consciousness and realized he was tugging my head to get a pillow under it, and he'd covered me up with a blanket. I totally broke down with emotion. *sniff*

[Bernard]

Hi lvk, welcome to the forum.

Our oldest son has watched my wife have seizures since he was born. At around 3, he could recognize when she was having non-tonic clonic seizures and would alert me.

It can be traumatizing to a child to see their parents (who are supposed to be invincible, all power beings to them at that point in time) having seizures. But, they are pretty resilient and a little bit of talking has always helped reassure my sons.

[ladyvonkulp]

It can be traumatizing to a child to see their parents (who are supposed to be invincible, all power beings to them at that point in time) having seizures.

We have always been brutally frank with our kids about Mommy's condition, and it helps that Paul is very objective and scientifically-minded. Yesterday at his behavior therapist, he was explaining to her how there's an electrical "break" in my brain, &c. She was amazed at how well he understands it already.

[ladyvonkulp]

Yesterday I finally saw my neurologist, after 10 months. Between how hard it is to get into her office, and her going on maternity leave, it's taken that long to get in. Normally I don't have seizures very often, every other month or so, but often enough to be annoying.

Over New Year's eve/am I had 5 t/c episodes within 24 hours, including 3 while I was asleep, which is unheard of for me. It was originally going to be the end of February before I saw the doc, but that changed when I told the office assistant what had happened. They had me take a sedative for 3 days, which was truly awful, plus the two additional days it took to wear off, making me a totally ineffective parent with no memory whatsoever. They'd also told me to up the anticonvulsant I was on, and even with totally forgetting to do that, I still had no additional seizures. That flurry was absolutely atypical for me, thankfully.

I've been on Tegretol/carbamazepine in some dosage or another for 16 years, and it's never fully controlled my seizures, especially since the stress of being a parent. They've occurred almost always first thing in the morning, when I get the original boost of adrenaline upon waking up, and before my morning meds have taken effect.

I've talked to one of my other epileptic friends, who has been really happy with Lamictal. I mentioned that to the doc, as well as the possibility of using extended-release carbamazepine so I don't have the adrenaline jolt + low meds in the morning, and she was all for that. I will start ramping up to using Carbatrol and Lamictal as soon as I can get the prescriptions filled, which may be a few days, considering that one of them has to be filled by mail.

I also got the results of my MRI and EEG from last summer, it's been that long. The tests confirmed that there's actually something physical to be causing all this, some abrasion on my left temporal lobe; I've had some form of mesial temporal lobe epilepsy on and off all my life. The doc said that if three months on this new medication doesn't control things to our satisfaction, we may try the stress-induced sleep-dep surgical evaluation, but I'm really hoping the meds work. It worried me a bit how easily she jumped to brain surgery as an option for epilepsy as mild as mine, but I suppose that's her job.

Has anyone else here taken Lamictal and Carbatrol together? Any advice about side effects?

[alivenwell]

Welcome! I've been on Lamictal for at least 7 years and I've had no seizures during that timeframe. I'm also on Mysoline. One thing I'd also suggest is that you insist on brand name only. Generic drugs have too many different fillers in them.
Other people like RobinN's daughter had bad experiences with Lamictal, possibly because she's younger than I am.
For me personally, stress is a big, big factor. I walk 2 miles every day. The only other factor that might be playing into your seizures that I can think of is your body's adjustment to being a new mom, hormonal adjustments, and fatigue. I adjusted to Mysoline right after I had my son and it was a MAJOR adjustment for me. In the long run, it worked. Like you I also have temporal lobe epilepsy in the left temporal lobe. I'd hold off on the brain surgery, especially if the scar is deep within your brain. That's practically impossible to reach and remove.
I haven't tried Carbatrol. I've been on Lamictal and Mysoline for many years with success.

[ladyvonkulp]

Stress is definitely a huge factor for me. My seizures were not a big part of my adult life until I got into grad school, and then they calmed down until our kids were born. Somehow my body knows not to have them *during* the stress period, e.g., while we're traveling, but as soon as we get back home is when they usually strike.

[alivenwell]

Stress is definitely a huge factor for me. My seizures were not a big part of my adult life until I got into grad school, and then they calmed down until our kids were born. Somehow my body knows not to have them *during* the stress period, e.g., while we're traveling, but as soon as we get back home is when they usually strike.

That seems to be true for me also. When I'm totally bored or not as busy, I am more likely to think of negative stuff, which in turn can potentially lead to a seizure. With traveling, you're also adjusting to different schedules for sleep, medications and foods. I successfully drove across the US this past summer for vacation, but made sure I took the meds at exactly the same time every day by setting alarms on my cell phone and watch. That method also really helps me stay on top of the epilepsy with any irregularities in my schedule. I listened to my body and slept when tired. Like you, I also have several college degrees and I was less prone to have a seizure during college years. I suspect it's because I could practically choose my own schedule. Kids don't let you always pick that regular schedule. But, in the long run they're so precious and well worth it. They will grow up learning and understanding epilepsy much better than some of their peers.
I kept a log of potential factors like stress, illness, lack of sleep, etc. in a Franklin Planner that I got for free through work. If I forgot why I had a seizure, I went back and referenced it to look for a pattern that I might have forgotten or not noticed.

[Nancy]

Hi lady ~ In 1990 when my seizures started I was 46, new to living what I thought was a hideous life style. I sure was unhappy and wanted OUT. Of course I thought seizures were caused by that.

In 2005 I finally learned they were caused by a small tumor deep in my LEFT TEMPORAL LOBE.
Almost a lol there, huh?

I've learned since then that there are many sections of that lobe and my tumor was in the "easy" one for surgery. The surgery in Feb., 2006 did not stop seizures so I had another surgery May, 2007 to remove a bit more ~shudder~ tissue and the hippocampus. I haven't had another seizure since then.

Surgery is not a difficult or a bad as it sounds and seems -- it just requires a great hospital, surgeon and lots of preparation.

Wishing you the very best.

[ladyvonkulp]

The friend I talked to about Lamictal *also* has a left temporal lobe abrasion/problem, I wonder if that bit is just more prone to damage, as it were.

[brain]

Lady!

Welcome to CWE and hope you can find
support and browse around and find
additional resources and information in
CWE. Sorry you're having to experience
all of this.