Neurology Appointment - Possible Seizures, What to Expect? - Mothering Forums
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#1 of 11 Old 06-30-2008, 05:38 PM - Thread Starter
 
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Hi Mommas,

My son (7 in August) has an appointment with the neurologist tomorrow. He's seen the neuro once (when we were flirting with an autism spectrum dx) but in the past few months he's been having some interesting episodes that the neuropsych and the pediatrician think might be seizures.

I have been keeping a log of his "episodes", I'm thinking that it might be a good idea to bring this with me? Anything else that I should be prepared with for a neuro appointment to discuss possible seizures?

Thanks!
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#2 of 11 Old 06-30-2008, 10:34 PM
 
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bumping this for you!
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#3 of 11 Old 06-30-2008, 10:46 PM
 
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are they doing an EEG? When Maura had a seizure, they scheduled her for an EEG before we met with the neuro (who had called me to discuss what happened on the day of the seizure.)

Then they went over in detail what happened when Maura had the seizure, asked questions about behavoirs, etc, if she stared off and hard to snap back into focus, her history, if she had had any weird incidents, things like that.
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#4 of 11 Old 06-30-2008, 10:49 PM
 
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try to catch them on video if you can. that helps the neuro a whole lot. We've never gone just for seizures, so I don't know what to expect from that but probably an EEG.
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#5 of 11 Old 06-30-2008, 10:51 PM
 
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I would suggest videotaping the episodes. Keeping a log is fantastic but seeing say so much.

I had to convince the dr.s that D was having seizures, I can't imagine them believing me without having the clip, since D's first 2 eegs were clean, including an overnight VEEG.

Good luck,

Mary:

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#6 of 11 Old 06-30-2008, 10:51 PM - Thread Starter
 
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Thanks Bethany!

Peeky - He had an EEG a few weeks ago, just the 30 minute one. The neuro has the report and I believe it was normal. The neuro that read it (at the hospital) dictated the wrong report and sent it to my pediatrician who informed me that postictal activity was noticed but he hadn't had any of his suspicious episodes during the day of or the few days before so I was confused. My ped followed up and found out that it was the wrong report and that Alex's was normal.

Thanks for the info, I just want to make sure I'm prepared so I don't have to wait another six weeks for an appointment.
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#7 of 11 Old 06-30-2008, 10:52 PM - Thread Starter
 
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Oh thanks Aniyah and Mary. Mary, I remember you suggesting that and tried - he's only had three "episodes" since then but they were short by the time I got back they were done. I now have my digital camera by my bed which has a video mode.
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#8 of 11 Old 06-30-2008, 11:12 PM
 
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Hey mama,
I know it can be tricky. It was for me in the beginning because they were happening randomly and I'd literally have to wear the camera on me to capture it. Not to mention, they were happening at night and it was tricky to get enough light on and not wake Devon. Overtime, I saw a pattern to her sz so I know when to expect it. It doesn't sound like your case so if there is a way you can keep a camera in your pocket, that might do the trick. Pain in the butt, I know, but OH SO valuable to have it to show the dr.s.


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[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#9 of 11 Old 07-01-2008, 08:19 PM - Thread Starter
 
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The appointment went really well, the doctor was great and complimented me on my note taking hehe. He said that it sounds like Alexander is having complex partial (I think that is what he said) seizures and that we could do another EEG but it might take five EEGs to even see something.

He said that not only do the nighttime episodes sound like seizures but the potty accidents he's had during the day (at school and at home) are likely seizure-related as well as Alexander doesn't even realize he's having an accident (he just kind of zones out during them) and has been potty trained for almost four years now.

He wants to start Alexander on Keppra and see if his episodes are reduced or stop completely. He explained that in the US Keppra is usually added to a different seizure medication but that in Canada it is often given initially without additional meds and that more doctors in the US are starting to do this as well.

Now I'm off to research Keppra. We go back in six weeks for a follow-up.
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#10 of 11 Old 07-01-2008, 08:39 PM
 
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Hi,
I am glad that it was a productive appointment. Good job with the note-taking mama!
Before she was on the meds, Devon would have the episodes (we now know they were sz) and sometimes pee after or during.

Keppra was the 1st sz for D. Geneticist #3 was adamant that D was having sz (she was the first to agree!) and just about insisted that we do a trial of Keppra. We did and while it made a difference it wasn't too much of a difference. For D, the Sabril did more in terms of control.

How are you? I know no one wants to hear the S word, but, if he is having them, CONTROLLING them can very poss. make a great difference!

Good luck! The only side-effects with K, that I know of the somnolence and behavior issues. Some people say B vitamins (B6? can't remember) helps with the "Kepprage".

Please keep us posted.
I wish you much patience with the eegs, we went through 3 before we found D's sz.


Mary:

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#11 of 11 Old 07-02-2008, 03:27 AM
 
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My dd was on Keppra for almost a year - she also has complex partial seizures. Just watch for behavioral stuff - it's very common with this med, and her seizures weren't well controlled on it by itself. We've just transitioned over to Tegretol and things are 80million bazillion times better. Yes, that's a technical term.

Good luck! Keep us updated!
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