Hi, maybe I should introduce myself. I am new to the board, I have been read for weeks and feel comfortable finally with all of the advice you all have given to so many people who come to you. Thank you for making me feel all warm and fuzzy.
I am a mom to 5 children who are almost all grown. They range in ages from 28 to 11 plus one granddaughter. In december of last year, a week and a half before Christmas, my 14 yr old son had a TC at school, in the lunchroom, before school. It took them about 30 minutes to get him stable enough to transport him to the hospital. They called me at home and wanted me to meet him at the er. I beat the ambulance to the hospital by about 15 minutes. So it was a very long one. After all of the tests they finally determined JME. He is on Keppra, one in the am and one in pm. However he forgets to take them all the time. I try to remind him but it seems like I cannot be there all the time.
He has had 4 since then, and some others that he named "blips". HE has lots of them if he doesn't take his meds. Two of these seizures have been at his dads house and one at his friends while he was sleeping. The friends were still awake and told him in the morning that they watched him. HOwever, he has never had a TC at home with me, UNTIL last night. He came home from working with my husband after 9 hour day, and took a shower, said he was tired, and then he came down and took one of his pills. I asked him if he forgot this morning and he told me yes and I asked if he was having "blips" and he told me he was having some little ones. Then he got some pizza and was eating at the bar. He had just finished and I was watching tv and heard the loud yell. I turned to see what he was doing as I though that he was playing with the dogs and he was tonic, stiff as a board. I rushed over to get him off the barstool and hollerd for hubby to help me. We got him down on the floor and safe and waited and held him while he finished. He was choking at one point and I thought he may have not swallowed his pizza all the way. He finally expelled it, don't know if his body automatically did it or what, but he vomited and choked. The seizure only lasted about 5 minutes but then the phase after was about 45 where he basically was "out of it". Confused with a lot of questions.
Sorry this is so long, but I am still really shaken up, it put both me and my husband in tears to see this. HE is a big strong construction dude and have very rarely ever seen him in tears. But I think I am more mead than anything else. I know you have heard this before, but WHY? Why does this have to happen to a very lively teen age boy, who is otherwise very healthy, with his whole life ahead of him. I guess what I am asking for is a bunch of great big hugs today. My stomach is still in knots and I had to take and anti anxiety med myself last night to be able to sleep. Even so I don't think I got much. I feel mad and jittery and want to stay in bed with the covers up over my head and hide from the whole wide world.
Please, can someone help me get through this today, TIA and hugs to all of you too who have to do this everyday too.
First, let me say I'm sorry your family and most of all your son have to endure this.
Second, let me say that your son is lucky in at least one sense; most likely he is dealing with this better than you and your husband, or soon will.
He is lucky because his epilepsy is showing itself early. I know this may not sound like your idea of luck, but he will learn to deal with this affliction because of his youth.
I have adult-onset epilepsy, and although my seizures are not nearly as severe as your son's sound I can testify how simply having epilepsy can upset your life. With adult-onset epilepsy, a new sense of normalcy can take years to form. Your son will not have this problem. As I mentioned, you and your husband will probably be grieving this longer than he will.
To help him remember to take his medicine, try a watch with a 12 hour timer. I wear a digital watch for just this reason, and restart it at each dose. The same feature is probably available on a phone if you have him carry one, either now or at a later age.
I wish I could answer about Why. It seems that acceptance is part of the grieving process.
Thank you for finally replying. And yes I am definately grieving all over again. I did that in december when all this started. I thought I had gotten over that hurdle until NOW. My stomache still hurts and I cannot eat or drink anything except water and although I can stand to lose a few pounds this is not a great feeling. THank you so much for the suggestion of the watch or phone. Yes he has an Iphone he just bought and I will suggest to him ton ight that he set it for the time he needs to take his med.
Thank you, it helps knowing that I am not alone and that maybe some of my grieving is normal. I feel so guilty...............and so angry............no to mention what this is doing to both of our bodies. HIs because of the epilepsy, mine because I have fibromyalgia and know this is going to throw me into a big flare again.
I hate it but I know exactly how you feel. My son is 23 and started having seizures about 2 years ago. He has other medical issues.. this was just one more thing to add to the mix. Please tell your son it is very important for him to take his meds!! Alot of people can completely contol their seizures with medication and the Drs say that keppra is one of the best. My son has to take 3 different meds and he still does not have total control, but I try to stay optimistic that we will get there.
I don't have fibromyalgia but I have arthritis and let me tell you stress does aggravate it. I have had several problems due to stress. No matter how hard you try when its your kid it really hits hard. I hope things go well for you. Hang in there and just know that you are not alone.
My 16 year old son was just diagnosed with JME and our neurologist is changing his meds to Depakote (sp?). We're hoping this works better than the Lamictal he was taking. From my research, Depakote seems to be the most commonly prescribed fmed or JME. You might want to check it out. Or...if your neurologist disagrees, please let me know why and I'll check it out. Are you LDS? Just asking because I am and I noticed you live in Utah. Please take no offense if you're not. Just curiosity.
That's the one question often we can never really answer. Often they start for no reason, or out of the blue.
You might want to go to the pharmacy and buy two med trays (different colors) one for AM and one for PM. Have him or you fill them weekly. Leave the trays in a visual location as a reminder to take them (kitchen, counter, table). I had been filling my trays since elementary school. They help when you can look and verify if you took your meds or not.
not sure what else to say... It is his duty to take the meds, so don't blame yourself on that.
Thank you all for replying. I am feeling a bit better tonite and so is Sid. He made it through a full day of work and was proud of himself. He came home in high spirits and decided to go to a movie with his friends. It seems if he has that med in him that he feels much better and that it seems to be working well. The neuro talked about uppping the dose but I think as long as he will take it it is doing the job at this level and hopefully will stay that way.
I have been reading alot on the internet, trying not to let things scare me, lol, about this monster since he had his first one. So yes, I was prepared. Hubby doesn't really like to talk about things like that, so when it happened he was not prepared. But I talked him through it too. At first he started trying to hold him down so he wouldn't bounce his feet up and down so much, but I asked him to just keep him from hurting himself and stay there with us and he did really good. He still hasn't been able to talk about this to us, but Sid and I talk alot. I have tried to edjucate Sid too so he kinda knows what happens. We even watched a couple of videos of people having a TC because he was curious. Now, I think that I helped him enough that it calmed him down about it.
Do any of you that have seizures or have loved ones that have them, feel like crying after you come too and feel like total S&!**. He sad he just feels like crap afterwards and felt like he wanted to cry. I told him he could if he needed to.
Well, wow, I am long winded. SORRY. But thanks alot for replying and letting me know that I am not alone.
PS draked1- I used to be LDS, but haven't been for many years, but I do "Believe" still. And have asked to be put on prayer rolls at the temple. My MOm and sister both put us on them. I have also contemplated asking my ex-husband to come and give us a blessing. Maybe I will someday
The med trays work well for my son also. We pretty much do the same thing as Travis. Last time my son had a TC, he thought he was being kidnapped because he had a circle of people around him. He was very frightened and ready to fight when he regained consciousness. Luckily, my husband got there and took care of it. My son doesn't get emotional after a seizure, just very frightened. It's probably different for everyone. Do you know of a good website for med alert bracelets that teenagers might like? Does your son wear one?
I was wearing one for a couple of years. From a person that was trying to raise funds, not from any specific group.
If you web search for something along the lines of "rubber wrist band" you can find a TON of them with embossing text in them. Some groups use them for "save the dolphins" or "clean the parks". Whatever cause they wish.
I found mine from an indie seller at a community sumer bash. It wasn't overly in your face saying "i have epilepsy", but it would let others know if they looked at the text on it.
Only problem is the rubber band type break after a few years. So you may want to think of metal wristbands and have them decorated (altered/painted?) so it's not just stainless steel.
Draked, thanks for the suggestion on the med tray. I have about forty of them laying around here as I have fibro and tried that for a while. I take so many meds myself that I got tired of filling all of them all the time. But with Sidney only having one at night and one in the morn it shouldn't be too bad.
I have looked for med alert bracelets for him before and just never got him one yet. I asked him the other day if he would wear one and he said he would so I need to look again. If you find one that is reasonable let me know and I will do the same. I had a lady on ETSY tell me she would make me the bracelet part for a dollar if I found the alert part. She was so nice. She was going to do it for free and I told her I didn't feel right about that. ANyway thanks for the ideas guys. I am feeling better and better everyday but still having that moment runnig through my head and it is driving me crazy. I am sure it will go away someday, but I want it gone now, lol.
I feel your pain, it's hard to feel so helpless to do anything to relieve them of any discomfort.
I have an 8yr old son with BioPolar and lately started having "abscense" seizures. One of the meds he takes for his BiPolar needs to be administered 4 times a day. I found a multi alarm watch that he wears every where to remind him of his next dose. It has been a God send.
I will be praying for you and your son,