I made a posting that describes my sons seizures and yesterday under Childhood Epilepsy Questions. I am new to the world of epilepsy and seizures and looking for some guidance. Most of my sons seizures occur during the early morning hours, usually just before he wakes up in the morning. On the days when he has had multiple seizures, it will normally happen near the end of sleeping after the initial seizure. I am wondering if there are other children out there that have the same sort of seizures. What have you been told that can be causing these seizures and what meds have you been using that seem to work?
I am doing everything I can to read about these types of seizures, and I am looking for those that are currently experiencing those seizures. It makes it very difficult to sleep at night knowing that at any time he might have a seizure.
I look forward to any and all responses.
HI and Welcome, Yes, my son has seizures mostly early in the morning hours, sometimes convulsive sometimes not. He has been on Dilantin, Dilantin XR, Tegretol(allergic), Depakote and Zonegran. FOr him Zonegran at low doses did the best to lower the seizures and had less impact on learning. Nothing has kept him seizure free. He is currently in a weird place, off meds for a year, still seizing. We are still searching for answers to help him.
John Freeman has a great book, Guide to Childhood Epilepsies that is a good start.
Hope you find quick control for your son. Is he seeing a Pediatric Neuro> that is important.
mom of 2 teens who have battled seiuzres.
It is great to hear from you. I have seen your responses on other postings. I am going out to find that book today to begin some good reading.
I am sorry to hear that they took him off of the meds and that they are not sure what to do next. What types of seizures does he have? Have you been told anything as to what might cause those early morning seizures?
Wish I could help you on this one. Jake seizes whenever... There is no "time" of day that is worse then another.
BUT, I do know how hard it is for the parents to sleep knowing that it could happen and/or is happening. We put Jake in bed with us during his cycles. But, this is getting harder as he gets bigger - he takes more bed then his Daddy Do you have a monitor in his room. I know he's older, but Dad might feel better knowing it's there. If your son thinks it's a baby thing, maybe move the bed around and place it close to the head of the bed on the floor.
Another good book, by the same author is Seizures and Childhood Epilepsy a Parents Guide. If you can't find them in your local book store (we couldn't) they can be ordered online @ Amazon.com
You and your family are in my thoughts and prayers as you try and work through this.
It is great to hear from you again. We may try that with the monitor once we get through these current seizure spells that he is going through. I am fortunate with him only being 4 and only weighing about 36 pounds, so he does not take up much room in bed right now.
I did pick up the book by John Freeman this weekend and have begun reading it. There is some great information in there. It is hlping to answer a few of the questions that I have.
I hope you had a fantastic Labor Day weekend.
God Bless you and your son. I was brought to tears by your story again. I just wanted you to know that I am still praying for your son and all the others on this board...even if they aren't the ones on here typing out their stories but a loved one is.
It is the support and especially the prayers that are expressed by everyone out here that will help someone find a cure for this and allow for each person with E to live a long and prosperous life.
Once again, thank you for the prayers and support.
I was wondering what sort of monitors do you use? are they the baby monitors? My 16yr old son has recently started having seizures 3 of the 4 have been during the night and the only reason we knew was because his girlfriend was with him. It was something we were considering getting but was a bit apprehensive about it cuz i would have to make sure i switched it off when his girlfriend slept.
Yes, we use the baby monitors. My husband is better at hearing him then I am... I don't think he's missed one yet.
You could turn it off from his room and have them turn it back on latter in the evening... Hats off to you Paula, I haven't had to go there with the girlfriend business yet. My oldest is 17, but his girlfriends parents wouldn't dream of letting her stay, even if I said she would be sleeping on the foot of my bed
Hi - seizures in the morning?........ happened as our Rebecca woke up - in fact it went on daily for @2years. She is now 18. This was way back when she was age 4. Wow, it was difficult as I would sit outside her room listening for her to wake, have a seizure and then start the day. They often happended as she was drifting off to sleep as well. No meds helped her, but that pattern left eventually and we were on to a new one. Always up for change is how we live life. You certainly reminded me of those times. Its unbelievable what one can get used to. Today Rebecca was awake for 2 hours before she had a tonic clonic - 20 minute seizure - had to get a neighbor in to help - living life though.......Cheers.......Paula (Rebecca's Mom)
David, my son has almost the same kind of seizures, they have only happened at night when he first falls asleep...they put him on depakote. he is only 14 and i am wondering if he will have to deal with this the rest of his life??? We see the neurologist next week and hopefully he can answer some of my questions...but the answer to yours..is YES there are more out there..my son...