Here We Go...

Living with grand mals \ You're pretty "wigged out" right now -- and should be!! But rest assured that how you feel right now will not be how you feel every day from now on. My son had his first grand mal at a birthday party at age 5. It completely freaked me out, of course -- I'm convinced that even a neurologist would be SERIOUSLY RATTLED by seeing a child of their own, who's never before had a grand mal, suddenly go into one!! I know I was shaking and had seriously surging adrenaline for hours afterward. He didn't have another for 11 months, then it was one month until the next. All in all, he's about to turn 14-year-old and has had a total of 10 grand mal's. Some were almost 3 years apart...the closest have been one or two months. So, in one respect, yes -- you have to come to terms with the idea that one could happen at any time -- the total "random-ness" is, to me, the scariest thing. But, on the other hand, you have to go on with life and she does, too. SO, if her situation is anything like my son's (and of course EVERY seizure disorder is different!), you have to focus on avoiding the "worst case scenarios" in terms of what she's doing when she has a seizure.....but also do so keeping in mind what type of quality of life you want her to have. In our case, that means he doesn't swim (or tube, or ride in a boat, or sit on the edge of a dock, etc.) unless he's closely supervised by someone who's responsible and fully aware of the dangers. In addition to the water hazard, we've also made an issue of him not being more than 3-4 feet off the ground unless he's restrained. Making sure he takes his medication consistently and gets a good night's sleep every night are also precautions we can easily control. Recently, we initally said "NO" to a spend-the-night party at a friend's lake house based on the fact that they would be spending the whole day on the water AFTER sleeping over (and sleep over = sleep deprived). That's two risk-factors together (plus the possibility that he'd forget his medication being away from home) -- and too much of a gamble for us. He ended up suggesting a compromise in which he did spend the night, but didn't go in the water the next day. We agreed -- but STILL made sure the parents knew of our deal and how important it was for him to stay away from the water after being up late. I also picked him up early so he didn't have to "suffer" on land for too long while everyone else was out in the water! Your child may never have another grand mal.....or she may be like our son.....or hers may be more frequent. It will be easier for you to judge how risky things are once a year or two has passed and you know how often (or not) she has grand mals. Of course, it's always possible for the incidence to change suddenly -- he went from no seizures for 29 months straight into a period of 3 seizures in 7 months.....?!?! So, if they continue, you'll probably never know what to exepct in terms of timing. The fact is, epileptics are more likely to die due to accidental drowning or falls.....but the majority DO NOT. For us, we try to take reasonable precautions, teach him to do the same, and let him live his life, too. It's a tricky balance -- and to help us decide what to allow, I ask myself a question someone once described to me as following the "regret factor" rather than the "risk factor"......it's basically, "If I allow him to do this, and something happens, will I be able to forgive myself for making this decision?" Often, that's yes.....sometimes, it's no....but that one question has helped me feel sure of my decisions in what to allow vs. not allow as his parent. I hope it helps you, too. By the way -- I don't know about parents whose children have frequent seizures....but at least in our case, I have NEVER gotten "used" to seeing him have one. I suspect it will always shock me when he goes into one, and I'll always be shaking for hours afterwards. I wouldn't be surprised if that's the case even with parents whose children have them far more frequently than mine!!

Hi Kassideysmom, I know exactly what you're feeling. Our five year old son, Zoey, had his first tonic-clonic (we call them the big seizures) a week and a half ago. I didn't see this first seizure, he was at school. The reports from the teachers made my heart stop. They released us after a quick neuro check and a CT scan, but 10 minutes away from the ER trying to get home, our happy chatter box suddenly quit talking. I turned to see him rigid, limbs sticking straight out, drooling, and starting to turn blue. I was scared to death and a bit frozen myself. I was an EMT and a nurse and took care of other people when they were in trauma situations, I always thought when something happened to one of the kids, I would just react the way I did at work - and even thought my reaction would be faster because it would be one of my babies. After I stopped the vehicle, my husband had to slap my arm to get me to move out of the driver's seat and get to my son. Of course this was only a matter of seconds, and once he slapped me the EMT kicked in and I took care of him while husband raced back to the ER. This was Monday. He had a third "big" seizure that evening. All three of these tonic-clonic seizures were about 5 hours apart. They snowed him on dilantin and ativan on the third one and when he finally started to come around it was like he was someone else. I know it was the reaction of the meds, but it was scary as hell just to see the difference in behavior. They snowed him shortly after this to do his MRI and he slept for the rest of the day. This was Tuesday. The first day back at home I swore I was watching someone else run my son's controls, like someone else was inside him and my sweet little man was missing. The doctors assured me this was normal and a result of working all the "dope" out of his system. They also said it would take about a week for all that to leave. In trying to make his life as normal as possible under the circumstances, he asked to go out and about during the lunch hours and I took him where he wanted to go. I had pushed the shopping cart next to the truck door, turned to unlock the door, and was turning back around to get him out of the cart. His body was there, but he was not inside. He just sat and stared, wouldn't respond, kept moving air and didn't turn blue, but lost control of his bladder. This lasted about 30 seconds but I could have swore it was a lifetime. When he came back, he just looked down, suprised he wet his pants. Later that afternoon he had another seizure similar to this but it lasted 2.5 minutes. It scared me. He wasn't rigid or anything, but it wasn't the 30 second absence seizure I had seen a few hours earlier. This was Wednesday. Thursday he had another short lived absence seizure. Friday was a good day, no seizure activity whatsoever. Saturday was different. He wouldn't wake up, when he did he just wasn't himself. He looked like he was exhausted and he just got out of bed. The lethargy continued until midday when he had another tonic-clonic. He was wiped out after and slept most of the remainder of the day. I have only taken two breaks away from him in the last week since this began and both times he had a T-C. I feel guilty I wasn't there with him even though my husband was and did everything correctly and wonderfully. I feel scared to go anywhere or be away from him. I just let him sleep in his own bed two nights ago. I have had him next to me in our bed since he came home so I would feel if he was in danger. Two nights ago he got out of our bed and got into his on his own. Last night was hard because that is where he wanted to be and I had to let go and ride on faith that it was ok. I am so scared that he is going to have a big seizure at any time. I am also afraid that if proper attention isn't given to him, he will be under long enough that the lack of oxygen will cause issues with his development...or worse. I keep having a nightmare that he seizes and never comes out, like he's stuck in the clonic phase forever. The medical professional I am is trying to talk to this panic stricken and shock ridden mother side but the mother side is too freaked out. The fall semester is starting in little over a week, I can't focus on my lesson plans (I am now an instructor at a university), and I constantly worry about what will happen when he is at school. I don't know what else to say, except to get back to where I started with you, that I know what you are feeling and I can't seem to get out of this cycle. Every seizure brings it all back and I have to start over. I don't think I've offered anything of use unless its knowing that you're not the only one to feel that way. Take each day at a time, sometimes each hour is easier - that's the only thing I've learned over the last week. Much Love, Sheila