10 YR OLD SON W/ UNEXPLAINED SEIZURES

[Christie220]

My son began having seizures this year and we are not sure of the cause. He had 2 febrile seizures when he was 5 (a late age to start as I understand) and hadn't had another seizure until January of this year. I should also say that he has been diagnosed with Asperger's, which can be a risk factor for seizures during puberty. His seizures always seem to come when he is very sick with a fever or very stressed (he had two the day after he had his tonsils and adnoids removed) and always during sleep or extreme exhaustion. His last one was on Oct. 29th, where he had a fever of 104 degrees. His pediatrician said he had broncitis and put him on an antibiotic. He's had a CT scan, an MRI, 3 EEG's, and recently a video EEG and all came back as normal. He went to a cardiologist 2 weeks ago and all tests were normal, including the Holter monitor results. I guess I'm at a loss as to what could be causing the seizures. I will say that since my husband left for Bahrain in July of 2006, my son has been very stressed. (my husband is in the Navy) He'll be coming home in June where we'll be moving to another state, so I have been going through all of this with my son by myself. Any help or suggestions would be greatly appreciated!

[Nicole1111]

I know what you mean about it getting harder as they get older, although my son is only 5, so I have a ways to go before I get to your stage.  He does ask about them and gets scared, but luckily he's still young enough to not entirely understand what he looks like during a seizure - I think that'd embarrass him a lot.  It seemed so much easier when he was only 1 or 2 and he would forget about it in a few hours!

Do you have a family history of anything odd neurologically?  We thought my son's epilepsy was totally out of the blue until last month, when I had an EEG done as a follow up to what I thought was a migraine.  It and all subsequent ones have been abnormal, and it turns out my history of fainting may have been a different type of seizure all along.  Who would have guessed?  So the nice thing is we have some idea where it may have come from now, even though ALL of his tests come back normal every time...

I don't have any suggestions for you, but sometimes it's nice to know you're not alone in dealing with these things.  I hope your son doesn't have any more until your husband gets home and can help you take care of him!

[Christie220]

Thank you so much for commenting on my post, I really appreciate it. May I ask how old your son is? I think the older they get the harder it becomes because they're more aware of what's going on. When he was 5 he had no questions about his seizures - now he gets so scared that he sometimes doesn't fall asleep until 1:00 in the morning. Just tonight he kept having a feeling that he described as "zzzzt" run from his feet to his arms. He's sick right now, so when it woke him up he started crying and saying "What if I have another seizure? I won't be able to have Christmas. How am I supposed to live like this when I get older?" Which breaks my heart because I really don't have all of the answers for him. I just try to comfort him while hiding my own anxieties. (he usually ends up in the hospital for a couple of days for an EEG and a bunch of blood tests) The hardest thing for me is that he sits up and screams before he has a seizure. I don't think he knows that he's doing it, but that's how I know that he's having one. Then to turn him on his side and helplessly watch until it's over is truly the most difficult thing to go through as a mom. (I'm sure you know) His neurologist has him on Trileptol, which we're going to continue for a year. If he has no break throughs he'll be taken off of the medication.

I've heard that puberty causes a rise in seizure risk as well. The nurse at my sons school said that the fluctuation in hormones is the cause of that. These kids have a lot to deal with, huh?

Thanks again,

Christie

[Nicole1111]

I'm not a doctor, but I"m in your boat.  My son also has unexplained seizures, although they are often provoked.  In his case even a mild fever of 99.1 may cause a seizure.  The good news is that all of your son's tests came back normal.  Unexplained seizures are absolutely the best "diagnosis" there is!  

Make sure you stay on top of his fevers:  when you see one coming on, alternate between Tylenol and Advil constantly (every 4 hours) to keep any spiking activity down.  This may mean setting an alarm and giving him medicine in the middle of the night.  We've avoided a few seizures this way, we think!  Keep him cool (light pj's, light covers) and well hydrated.  Have him take naps as often as possible, and *try* to keep his exposure to illnesses at a minimum.  (Avoid the grocery store, indoor playgrounds, and birthday parties if you can!)  

I've heard that the periods of rapid growth and hormone regulation (toddlerhood and puberty) are the most common times for seizures to rear their ugly heads!  Good luck!

Nicole