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  #1  
Old 11-29-2013, 11:17 PM
Longfarmer Longfarmer is offline
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Default Please talk to me about seizures.

Middle man had a big seizure a year ago. We decided it was a febrile seizure since it was a week after the MMR and he did indeed have a fever. I never took him to the ER or followed up with the pedi.

Last week, he had another big seizure. It was a lot more dramatic this time and he turned blue, took a loooong time to come out of it. I called 911 actually - and I'm an under-reactor (see above). Earlier in the day, he was at Kindy and had 3 "episodes" that were witnessed by 3 different members of the staff. I was told of the epidsodes at pick up. He then had another episode with me and then had the big seizure.

The episodes I did not witness were described to me as "he just fell down" and had no idea why or memory of doing it. He also seemed "off and not himself the whole morning". He didn't seem "there" after each falling episode. The one I did witness was much the same.

Our pediatrician is referring us to Neurology as well as having an EEG. The pediatrician doesn't feel this is a simple febrile seizure issue. I don't either after hearing details about the episodes he had at school. The pedi brought up meds as well though that bridge won't be crossed unless we come to some sort of cause or diagnosis.

I'm now wondering what to expect with the EEG and what life is like through this journey. I'm hoping this ends up being a lot of pomp and circumstance over nothing. Though my logical brain is having a hard time believing all the episodes are from nothing.

What can you tell me? What's your experience?

TIA!
  #2  
Old 11-29-2013, 11:40 PM
Jae Jae is offline
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We don't have experience with seizures, but the EEG is not too bad. They put a million little monitors on the kid (head) and have them rest, blow, watch tv, look at a strobe etc. Charlie had fun through it.
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Old 11-30-2013, 12:37 AM
ciles ciles is offline
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Kasey was diagnosed with focal seizures a few months ago. Basically, to diagnose it they did the EEG and then we decided to put her on Trileptal. AS far as seizure meds go, its pretty good. She doesn't have any funky side effects with it that we've noticed. Some of the possible side effects would have been increase in appetite, sleepiness, stuff like that.

We had to put her on meds because even though she wasn't having the type of seizures that could cause her to fall down or start seizing- she was having them and was unable to talk correctly or form sentences correctly and such for an hour or two afterwards. She just acted "off." Overall- since going on the meds things have been uneventful. She's had a few minor focal seizures- but nothing that caused the after effects.
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Old 11-30-2013, 01:47 PM
Veganmamma Veganmamma is offline
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The care of a good pediatric neurologist will be the most important thing. My son was 7 when he was diagnosed with Epilepsy. It was such a shock. The EEG helps determine what triggers seizures and location of the seizures in the brain. It turns out not enough sleep is my son's trigger. He has always woken up way too early and had trouble getting back to sleep. The most important thing is to time any seizure and even write down all the details as it helps to remember as much specifics as possible to help with diagnosis. It was a good detailed description of what the seizure looked like from my son's teacher at school that helped Neuro pinpoint the diagnosis.

HTH.
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Old 11-30-2013, 02:35 PM
Longfarmer Longfarmer is offline
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Thanks so much for the replies, ladies!

It's probably going to take months to see the Neuro - I should probably write down the details I remember now. It's also kind of a pain that each episode at school was witnessed by a different teacher. It took them all morning to see the pattern and then it was the end of the day.

I'm not really sure how to describe the seizure though. That part's a little blacked out for me now. Hopefully hubby can describe it a little better.
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Old 11-30-2013, 04:27 PM
Veganmamma Veganmamma is offline
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Well, I'd have each teacher jot down notes on what they witnessed and for how long (best guess) and Husband and you as well. The pattern of the small seizures before a larger one is important too and describe it down to awake and aware when seizing to blacked out, to mouth tremors and on which side, arm tremors and which side (or both) full body, tongue, eyes, drooling?, gargling, silent, head positions, every tiny detail helps. And length of each seizure. And very important: have everyone on the lookout for future seizures and have them time them and write down each. I'd also consider going to the ER for any future seizure because they would likely admit him, and do the testing right then and there. Then you will get the diagnosis before they send you home and you can do a follow up with the Neurologist. The thing is you can not mess with seizures. Some do brain damage and others do not. A child can die from having a seizure so until you have a proper diagnosis you do not know what you are dealing with. Thankfully our son's do not cause brain damage and usually not death. We went the ER route and got the diagnosis in 24 hours. Our son spent only one night in hospital before they sent us home.
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Old 11-30-2013, 09:10 PM
ciles ciles is offline
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oh yeah- definitely go to the ER next time there is one. My daughter had her severe one the day before her scheduled EEG- so we got one much sooner than we had been slotted for PLUS we got to see the neurologist a lot sooner. Our appointment with him had been for like a month after the EEG - but since we came in through the ER - we got to see him about 2 hours after the EEG.
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Old 07-21-2014, 04:44 PM
raindrop_333 raindrop_333 is offline
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Any update on this?
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  #9  
Old 07-23-2014, 02:53 PM
Veganmamma Veganmamma is offline
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I'd love an update too.
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Old 07-25-2014, 09:42 PM
Longfarmer Longfarmer is offline
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Thank you for checking in!

We have been seizure free (I think!) since his episodes last November.

We had the EEG and were not told anything. We did not get a phone call from Neuro so I assume that means the EEG was unremarkable.

November is coming up in a few months so I guess we will see if he is a seizure at the end of November kid.
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Old 07-26-2014, 01:14 PM
Veganmamma Veganmamma is offline
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Quote:
Originally Posted by jaceraden View Post
Thank you for checking in!

We have been seizure free (I think!) since his episodes last November.

We had the EEG and were not told anything. We did not get a phone call from Neuro so I assume that means the EEG was unremarkable.

November is coming up in a few months so I guess we will see if he is a seizure at the end of November kid.
Hopefully you are correct. We always get our EEG results at an appointment. You might consider calling and making sure that if there were abnormal results that they would have called,and that because you never got a call you should assume the EEG was normal.

I am glad he has not had one since November, but I'd call anyway to be proactive.
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Old 07-28-2014, 02:34 AM
AngelicScars AngelicScars is offline
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Quote:
Originally Posted by Veganmamma View Post
Hopefully you are correct. We always get our EEG results at an appointment. You might consider calling and making sure that if there were abnormal results that they would have called,and that because you never got a call you should assume the EEG was normal.

I am glad he has not had one since November, but I'd call anyway to be proactive.
This is a good point. Our Neuro called herself with the results of the EEG and they came back normal. Of course, she had to tell us his weaning schedule too, but still, it's good to be on the safe side.
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