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FLE - What does it mean??? -- Newly diagnosed son
Sat, 08/26/2006 - 09:43Topic: Parents & Caregivers
I know that I will have answers to some of my questions next week when we meet an epilepsy specialist, but I was really hoping for non-clinical answers from real parents living with a child with epilepsy.
My 6 year-old son was JUST diagnosed with Frontal Lobe Epilepsy. His history is: 2 (KNOWN) very short (20 second) seizures (about 1 week apart in June). Both occured in his sleep, and we were unable to wake him. Heavy drooling with a babbling death rattle sound. Rapid eye movement behind closed eyelids. We don't know of any others prior. Been watching/listening closely, and aren't aware of any since.
MRI was clear (completely normal), EEG apparently showed irregular brain activity, diagnosed as FLE.
His pediatrician has suggested we start him on Sodium Valproate immediately.
I thought it might have been BRE, and was optimistic he might grow out of it. It this likely with FLE? Will it progressively get worse? What happens if we don't medicate? Is it likely that his seizures will always occur in his sleep, or is it more likely that the pattern will change, and they will occur during the day?
ANY experience, information, insight is SOOOOO greatly appreciated.
Susan
Comments
Re: Re: FLE - What does it mean??? -- Newly diagnosed son
Submitted by Woking Mum on Sat, 2006-08-26 - 14:27
Essie,
Thanks so very much for your kind note and shared concerns.
It's funny, even though I know that epilepsy is relatively common, and there are probably hundreds of others who are wearing the same shoes we share, it is nice to have found a penpal, someone else who is literally going through all the stages simultaneously.
How is Nian taking to the medication? Is he on Depakote. I read that it is commonly prescribed for JME.
Thanks for the advise about medication. I agree, I'm hoping that the specialist will be able to shed a bit more light on the necessity for medication (or not). I just wish I understood more about the impact of not medicating ... Oh well, I've always believed in the adage of needing to learn something new everyday. I think we probably both have a month of Sundays of learning ahead of us. Someday we'll have a great laugh on the playground, reminiscing about our first few days at Epilepsy school.
Best wishes,
Susan
Re: Re: Re: FLE - What does it mean??? -- Newly diagnosed son
Submitted by Essie on Sat, 2006-08-26 - 15:37
I like that...the Epilepsy school's playground ... :) Yes, we have SO much to learn and to accept. The moment I heard "epilepsy" my world stood still. I cried the rest of the day (whenever I could get away from the kids and be private!) Then they said they needed to do a MRI to see if it is caused by something, like a TUMOR!!! My dad had been diagnosed with 3 different tumors - still in reminiscience (spelling?) - thank God. Since that moment we were SO scared for brain cancer that when the final diagnoses came - epilepsy without cause, I was nearly relieved!!! Can you believe that? I'm sure we're gonna have lots of ups and downs like that in the months and years to come.
My son is doing ok on the meds (Lamictal). He has had 4 seizures in the first 2 weeks. One absence and 3 myoclonics (jerks). He's had headaches, diarree, aggressiveness, weepiness, a rash for 3 days, extreme tiredness, things like that. The usual, I heard! But it's tough. He's getting better, and is on 25 mg now (started on 12.5). We're heading for 100mg of the Lamictal. In another 3 months we go back to do another EEG to see how the medicine is controlling the epilepsy spikes.
I heard from my doctor, ppl on this site and info on the internet that it is better to control spikes, than let them be. In very rare cases it can do damage to the brain, but it also seem to "mark" the spikes in the brain, setting it up for permanency and even worse seizures. So it seems that it's better to control it, before it can take over too much. That's the idea I get. I may be wrong. There is some info on this site about it, I'll see if I can find it for you.
Take care, (Sorry for my spelling mistakes, I'm actually an Afrikaans speaking woman from South Africa!)
Essie
Re: FLE - What does it mean??? -- Newly diagnosed son
Submitted by Essie on Sat, 2006-08-26 - 12:42
Hi Susan My son is 5 and a half, and was also just diagnosed with epilepsy. He had some kind of seizure (a drop attack), in front of my eyes. Have no idea if it was the first or not. It was so quick, that he would not have told me about it if I didn't see it. The pediatric neurologist diagnosed him with Juvenile Myoclonic Epilepsy. His MRI was clean, and his EEG also showed near-constant epileptiform activity. We're also still adjusting and looking for answers. He's been on medication for 2 weeks now (it happened 4 weeks ago). It's a hard, bumpy road, and I don't have answers for you, sorry. I'm too new to it all myself. But I can offer support and understanding, I'm going through everything you're going through. The fear while the MRI is done, the hard truth when they say something is wrong with the EEG, the hope that it might be something like BRE, the anxiety that it may be much, much worse. The constant worry, the nagging feelings that never leave you alone. And me too worry about his future. Will it be ok, will he continue to develop and grow normally. How will his life be. How will he cope in school. Will it progress. It's driving me crazy, and I can just pray for him, and for your son and everyone else who goes through this. What I can offer, is a bit of advise...I don't think you should go on immediate medication. The pediatrician may not know what medication will work best, and some is better for certain epilepsies. Some medication can even worsen a certain type of epilepsy! Except of course if it is dangerous for him not to be on immediate medication. But else, I'd rather wait to hear what the specialist can do or say. To change medication after a week or two could do more harm than be helpful. Good luck, and be strong. And please keep us up to date. Take care, Essie (mom to Nian(5) and Meonie(3))