Wow!! I know exactly what you are going through!!! My son just turned 13. He started having seizures and went through all of the same test. You are on the right track. Just last month (after 2 years!!!) the doctors told me that he was having non-epileptic seizures. His are stress / anxiety related. He is not on any meds. What has been successful with us is having outlets for stress relief. BTW easier said than done...but it helps. It has been suggested to us that puberty may have alot to do with the anxiety.
Let me also suggest that you take plenty of things for him to do while you are in the hospital. Keeping my son from being board while confined was a night-mare!
Thank you for sharing. We actually just came home from the hospital after 3 days. They did something that was quite amazing...they used hypnosis to bring about a seizure to see if it was the non-epileptic type & it was! (Lucile Packard Childrens Hospital @ Stanford is amazing!) - They said that often kids at this age are undergoing so many changes in body & mind & spirit, that they don't quite know how to process the stressors of everyday life or express their emotions to let it out. (They didn't say this, but I suspect this is more common in boys.) They suggested that we do not pay special attention to these seizures, but rather try to "ignore" them and let them come out. They also said that he should undergo therapy, counseling & maybe biofeedback as a form of treatment. Of course, my son says he doesn't "feel" stressed, but that's why they say it comes out this way. In other words, if he felt the stress or could express emotion more easily, his body wouldn't have to manifest the emotions/stress as seizures! (The docs say that these seizures happen the same reason some people get migranes or ulcers.) - The docs say that several months of therapy should help the seizures go away, but he said they are intense. Can you tell me what you and your son are doing as outlets & treatment? - How is he doing in school? (We have As & Fs on the same report card - 7th grade!)
Oh BTW...he wasn't the least bit bored: They brought in a Wii, he had homework & 10 visitors of family/friends from church. He also ate like a king!!!
I am sooooo glad you have answers!!!!!!!
Just knowing that he didn't have eplipsy or brain damage was stress relief itself!
He sees a counslor. He plays in the school band. Beating the fire out of a drum works for him. He is in school clubs. Our church youth group is awesome and is a great support group for him. The biggest thing is just letting him be a kid and doing things that he enjoys. I have learned not to ignore the seizures because we still have to keep him safe...but, to just not make a big deal out of it. We just wait it out and go on with what we were doing. I didn't realize that me hovering over him made it worse. He just wanted to be "a normal" kid. I have noticed the more positive he is about things the fewer episodes he has. Attitude has alot to do it. (His and Mine).
Lucky for him, he is really smart and makes A's and B's in AP classes. He has been able to keep up even though he has been out for several days at a time.
One good thing is that maybe our kids will learn how to deal with stress young. Something I wish I would have learned a long time ago.
I also want to thank you for sharing your story. It also helps our boys knowing they are not alone. Me too for that matter!!!
WHERE WERE YOU WHEN I STARTED THIS JOURNEY :)
I just read the dialog between you and another mom about seizures in your preteen boys....my son is 12 and has had 3 in the last 2 years and each time the ER trips have indicated that there are no real post seizure characteristics. We are waiting on a pediatric neurologist referral for more testing. I am taking with me the information the two of you have provdided in hopes that it will be helpful to them. The entire holding in of stress and emotions pinpoints my son exactly, and each time he has had one of these seizures, there has been some kind of grpahic discussion in the classroom that bothered him prior to the event.
I've been searching for support from anyone who is experiencing what we are going through with our 12 year old son. We are hoping that it's related to growth, he's grown almost 6 inches in one year and is 5'9. He's hit puberty head on with cracking deep voice, mustache, etc. He plays sports and has always been a top player and now he's having to take a break and hes becoming depressed. We have been through all the tests and Dr.'s say he has generalized seizures. Nothing showing a reason which I guess is good news. Getting him on the right medicine has been frustrating. He started seizures in January and he is in the process of trying new meds. He's had 6 grand mal and now he's experiencing petite seizures. the petite, which we call brain freezes at home, kept him out of school for one week, 8 or 9 per day. Has anyone found that eating certain foods or taking vitamin supplements are helping?