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New here, decisions and uncertainly, any thoughts?

Fri, 07/06/2007 - 16:44
I am hoping some of you more experienced moms here can give me some help. A week ago, on my daughter's 16th birthday, she had a grand mal seizure at home while doing her hair in the bathroom. It was very early (4:30 am) as we were preparing to leave for a 3 day youth trip. THis was the first seizure of any kind as far as I know. (In retrospect, I now know that when she fell to knees about five minutes prior to the seizure, this was all related.) So we called 911 and she took a trip to the ER and they quickly released her and sent her home to recover. She is a very healthy young woman and this of course was quite a shock to us. Yesterday she had an EEG and the results came back as "brain activity suggests susceptibility to seizures." So our pediatrician said that she needed to be seen by a pediatric neuro asap. Well... this is where it gets tough. She left town today for five weeks. She is in another city spending time with grandparents, cousins and doing a couple of week long youth conference type things on a university campus. The visit to the neuro will wait until her return next month. But I am so nervous that I am not taking this serious enough, or the opposite, over reacting. I decided to let her go today because when I asked what would happen at the visit to the neuro the pediatrician told me that they would just talk to her about what happened with her seizure last week. Well, this seemed like a lame reason for her to to hang around here because SHE has NO CLUE what happened, she doesn't rememember anything about it. And, apparently, there isn't anything to "treat' unless she has another seizure. So what was the point of even doing the EEG? I guess I am just kind of venting, but I am so confused by all of this and nervous about if we should be more agressive about testing...even pushing for a cat scan or something in the city where she is staying right now? Any words of wisdom for me?

Comments

Re: New here, decisions and uncertainly, any thoughts?

Submitted by GodivaGirl on Fri, 2007-07-06 - 22:01
Hi There, I'm not a mom, so I can't judge your post based on the opinion of a parent. One question for you though. Have you at least taken action and booked an appointment with the pediatric neurologist that they want your daughter to see for when she gets back? If so, odds are the EEG saying "brain activity suggests susceptibility to seizures." -- well, they have some ideas & sure, they need to follow up but if you're not totally freaked there is always the next in line parent that will want that appointment within the next 5 weeeks, whether it's a mother who's kid has gone into status, or a mother who's kid is newly diagnosed & more severe. Neurologists office visits for me are always kinda like my family doctor's office - if something really major comes up - well, he takes the time to quick see them because I'm his reasonably easy less severe case that just goes shopping if I have to wait 20 min (luckily his office is near a great mall downtown TO). Anyways, don't know about where you are from, but the part of Ontario, Canada where I live there are doctor shortages galore! I have a family doctor basically because I live close enough to the town I grew up in to go back & see the one I've had since I was a kid. My boyfriend & I have been together 5+ years & he's still on a waiting list to get a family doctor in our city or anyone within a 10min bus trip (we don't have a car). So, with that in mind - as a diagnosed epileptic, our government only really "lets" me see my adult neuro every 6 mths, and it was about the same when I was a kid. Every 3-6 mths unless there was major cause for concern. So, depending on where you live, I'd say make sure something is booked for within days of when your daughter gets back, but reality is doctors are often times so overbooked it's like a fantasy to expect you'd see them within 5 weeks anyway - especially if it's a specialist like a pediatric neuro. Just a thought. As far as doing the EEG - well, "possibility = inconclusive" - I've had some come back that way. Odds are they'll analyze where they think the "possibilities" are - focus on that more on the follow up EEG & make sure there isn't any major cause for concern. For me, my sleep deprived EEG's always show slightly more activity. The standard ones and ambulatory ones are usually both inconclusive. It may seem annoying, but in my case my neurologist wants his own set of tests - if you ask for that from a family doctor, you'd only be repeating it all through a neuro. Every neuro likes their own set of tests it seems. That's their specialty. Go thru the motions - odds are the neuro will do the EEG and follow it up with a CAT or MRI if need be. Good Luck ~ GodivaGirl.

Re: Re: New here, decisions and uncertainly, any thoughts?

Submitted by pabiabi on Fri, 2007-07-06 - 22:51
Hi Godiva Thank you for your comments. When I wrote that this afternoon, I was waiting to hear back from the neurologists office with an appointment after Aug 18th. Well, imagine my surprise when they left me a message this afternoon stating they could see her on Oct 2nd! So now I am more confused than ever. On one end I am hearing that this needs urgent attention, enough to consider rescheduling a trip for, and now... well they scheduled her 12 weeks away!

Re: Re: Re: New here, decisions and uncertainly, any thoughts?

Submitted by mjcolenc on Sat, 2007-07-07 - 09:01
My 12 year old son had a grand mal or as I am learning now, a tonic/clonic seizure on May 30 at a church event without myself or my husband there. We were notified by a neighbor he had had a seizure and was taken to the hospital. He was taken to the ER because it had been his very first seizure. He was checked out. He knew nothing of what happened. Had a Cat scan done, but no EEG. He was then sent home several hours later. He was able to go to school, and afterwards had a follow up with his pediatrician. They referred my so to a Pediatric Neurologist to get an EEG done. I called and made the appointment for which I thought was to be the EEG on June 19 because I said, my son's pediatrician wants him to have an EEG done, but it turned out it as just for a consultation. The sleep deprived EEG is July 31. It seems the pediatric neurologist is the only one in our area, so that is why it takes so long to get appointments. We were told to keep a daily journal of everything my son does from the time he gets up in the morning to the time he goes to bed at night. That way if another seizure happens, they can go over it and see if there is any kind of connection. Of course we were also told if any thing else happened to call the doctor. I had to do that because my son has had some other kind of episodes happen. Not a full blown seizure, but loss of memory.

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