New to all of this.....Would love some opinions

[efowler25]

Hello everyone!! My name is Elizabeth and my son Braydon was quickly diagnosed with eiplepsy in Thursday after a single Tonic Clonic seizure one week ago today. Braydon is 10 and otherwise an extremely healthy child. We started Keppra on Thursday night 250mg twice a day and we will increase every week until we are at the correct dosage.

Im concerned that he was diagnosed to quickly and would like a little insight. We have only ever had one tonic clonic seizure however the Neuro Dr (whom by the way WE LOVED) seems to think he may have been having absent seizures and they went unnoticed. I have been told by MANY of his past teachers he seems spacey and they wanted me to put him on ADD meds however we did not believe that was the case and never pursued medicine for it. On Sunday (one week ago today) he suffered a full tonic clonic seizure. He, after the jerking for about 40 seconds, we out cold for about 3 minutes, he urinate on himself, and also was foaming at the mouth. Without a doubt a seizure. We were taken by ambulance to the local ER were we were given a ct scan and released with instrustions to see a pediatric neuro DR within a week.

On thursday we took him to Vanderbilt Childrens hospital were we instructed to do a sleep deprieved EEG then we would see the Dr a few hours later. So we only let him sleep 4 hours the night before and took him in. We saw the Dr and he said without a doubt Braydon was epileptic. His brain was "wanting" to have a seizure the entire time he was hooked up to the machine. He spoke with us for over an hour, and to be honest one of the BEST Doctors I have ever dealt with and made is feel VERY at ease. However Im concerned we have jumped the gun and never should have started meds already. We also have diastat for emergencys. I'm feeling over whelmed and worried we should have gotten a second opinion....any thoughts??

 

[acpollard2010]

Hi My name is Amanda. My husband Has epilepsy and was diagnosed at 16yrs old and is going to be 30 in august. The Dr that diagnosed him did the same thing and instantly put him on meds within a week or less. My husband has the same seizures as your son (has a few more types, but still the same) It is very over whelming, and stressful. I'm hoping to put light on the subject for you. If you have a Facebook, you can find all sorts of epilepsy awareness pages that have a lot of articles about new advances with the treatment of epilepsy. My husband has a Vagus Nerve Stimulator, its implanted in his chest. It helps stop a seizure or prevent a big one. And there are surgeries too. I found a article online at thenewyorktimes.com titled "Surgery for epilepsy gains Urgency in trial" . I've always done my own research. I've always found more then what they were telling me.

 

[Nakamova]

Hi Elizabeth, welcome to CWE!

The diagnosis of epilepsy usually isn't made until after someone has two or more seizures. However, sometimes the EEG evidence is definitive enough that the diagnosis can be made after just one. It sounds like your son's EEG showed a "classic" inter-ictal spike and wave EEG pattern, and that, coupled with his tonic-clonic seizure and possible prior history of absence seizures, made the call pretty easy.

The same thing happened in my case (though without the prior history of absences). I had a definitive EEG after a single seizure and was diagnosed with epilepsy. I agreed to be medicated, though after about 6 months I tapered off the meds (under doctor supervision) to see if there was any chance I could remain seizure-free. No luck unfortunately, and I've been on meds ever since. (That was 13 years ago).

That's not to say that your son's seizures will follow the same pattern. Often the docs will encourage/allow someone to taper off meds after being seizure-free for 2 to 5 years. It could be that your son may "grow out of" his seizures. Unfortunately there's no way to predict for sure.

I think that given your confidence in your son's doctors (and their confidence in his diagnosis), medicating is the right decision. That said, if you would feel better with a second opinion, you should go ahead and get one, if only for your peace of mind. The medications aren't perfect, and there's usually a trade-off between side effects and seizure control. Keppra in particular is known for causing moodiness and anger, so you might want to ask his doctor about that and/or other side effects to be alert for. (Some folks have found that taking a B6 supplement helps mitigate this side effect).

If meds become problematic, you might want to look into alternative approaches using diet (such as the Modified Atkins) or neurofeedback. They have helped some folks achieve better seizure control, though the widespread data isn't available. More info here http://www.atkinsforseizures.com/ and here http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova

 

[efowler25]

Thanks for the feedback!! Most everything I read stated that usually it takes two or more seizures for a diagnosis, so I think that is where most of my questioning for a second opinion was steming from. But hearing that there are others who did not require it makes me feel more at ease. The Dr was fantastic and took his time explaining and talking to us, answering every question we shot at him. So I think I will stick with this and try and see where this takes us.

Some other questions I have and you all might not be able to answer....

How likely is he to have another major seizure? I have been freaked out ( although I now know how to handle it and it is not a true emergency unless it goes longer than 5 minutes) My son's only scared of having another one and him waking up and me not being there. Since his first seizure he has been sent home from school for "not feeling right" twice,( and he was only in school 3 days last week) which I think is him being freaked out another seizure is coming and I wont be there.

Our doctor told us not to stop our lives however to watch him closely until we have his meds all figured out. We have a vacation planned soon and he told us to go ahead and go however we were planning on things like rollercoasters, waterparks and go karts. Im concerned this is not a good idea. The dr did tell us that he does not think strobe light would affect his "type" of epilepsy which the Dr called Generalized Genetic Seizure disorder.

I guess I feel like Im waiting for the bottom to drop out and for it to happen again.......any suggestions to make that go away??

 

[acpollard2010]

as my wife told u i have epilepsy and i saw u put he has generalized i have the same likely chance of him havin another seizure depends on his body and the meds and how he reacts to them and his epilepsy might be also hard to control it all depends on individual and missin school b/c of seizures or feelin like it or feelin like it or needing that assurance from u at this stage is key actually and ur trip GO PLZ LET HIM KNOW NOTHIN HAS CHANGED IF MY FAMILY DID THAT THINGS MIGHT BE DIFFERENT.just becareful around the water and gocarts if there not to dangerous ones then he should be fine and i been ridin roller coasters forever but park might have rules and go wit him.

 

[Nakamova]

How likely is he to have another major seizure?

Epilepsy is full of unknowns, and that's a biggie. Everyone is different, and for you and your son it's too new for you to have a sense of how his particular symptoms will play out. It may be that, like me, he is medication-responsive -- i.e. as long as he takes his meds consistently, he'll be seizure-free. But everyone has a different seizure "threshold" and is susceptible to different triggers. Some folks are triggered by environmental stressors like flashing lights, or sudden movements. If your son hasn't been bothered by them in the past they are unlikely to be a trigger now, but it's probably a good idea to be conservative about new or unusual activities until he can get a handle on how they affect him. I remember after my very first seizure I felt terrible: queasy, dizzy, clumsy, exhausted, jumpy... I assumed it was due to the epilepsy but it turned out that I was on too high a dose of AEDs (Dilantin). Info like that takes time to figure out.

It's normal to feel extra-anxious right now -- there's no way around it -- but in time, you and he should be able to relax.

Why does the doctor think the epilepsy is genetic? Are their other instances in the family?

 

[efowler25]

No, no history in the family however he kept saying it was that it was something he was born with. Could be something in his genetic makeup, but he did not elaborate on it.

 

[Nakamova]

That was probably just speculation on his part. The majority of epilepsy cases are of unknown origin -- i.e., no known primary trigger like head trauma or infection -- but the science isn't there to assume that the cause is genetic instead. I think the current idea is that it's a combination of factors: Some folks are born with lower seizure thresholds than others. But they may never "cross" that threshold unless certain secondary triggers occur.

 

[Bathtub]

Big thanks to efowler25 and Nakamova, the more I read in this board the more I feel I'm not alone, sometimes other people tell your story better than you can yourself. You have both described what seems a pretty close match to my daughter's experience of a full TC seizure and generalised spikewaves seen on EEG, so based on your experiences I guess her docs will likely want to medicate her too. I'm not totally in favour but it helps to know this in advance and get her to research alternatives.

acpollard2010, Thanks for the reminder to get on and enjoy life Can't imagine my girl missing out on those screamy funfair rides!

 

[efowler25]

Bathtub I'm glad my experience can help someone else. We, 2 months later, are still very new to all of this. We are still adjusting the meds. Things have yet to be "normal" however we are adjusting to our new normal!!!! Life will never he the "same" but we are really embracing this new life and embracing our sons issues and trying to advocate and educate others about epilepsy!!! We go back to see our neurologists June 15th and hopefully our keds will be evened out by then.

 

[acpollard2010]

im glad u guys are adjusting well some don't it's a very hard process.and normal be as normal as can be