Forget genetic threads - let's talk seizures! lol! - Mothering Forums

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#1 of 6 Old 02-07-2008, 08:42 PM - Thread Starter
 
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Okay, so Maura has gone back to her new normal, after being off all weekend, after missing a dose of her seizure meds (Trileptal, given three times a day.)

Backstory - she started them about 7-8 weeks ago after a complex partial seizure and since being on them, has started talking a whole bunch more and understanding more. Saturday we missed hte morning dose and she was stumbly the rest of the day and the next day was stumbly and didn't say much, kinda stimmed a lot (she's not a stimmy kid.) Monday, she was better, Tuesday back to the new norm.

Dh and I have been thinking there has GOT to be some connection, that maybe she's been having seizures for a long time and no one caught it. Her EEG was abnormal, as a baby, she startled a lot even though loud noise didn't bother her much (she could sleep through the tornado siren a block away), and her teachers noted how some days she'd be on, other days she'd be off - but not in a stubborn, didn't want to do it way, but more out of it, tired way.

There has to be a connection. She has improved so much and when we missed the one dose, it was so obvious! Like today, when she got up from her nap, she had pooped in her diaper and I said "Ooo, let's change you, you're poopy." And she groaned a little and patted her bottom as if to say "Oh dear." I said something like "You don't like being poopy, huh?" and she said "No no no." A whole little interactive conversation and acknowledging bodily functions and all that.

So...

what should I ask the neurologist at our next visit? What other tests do you think should be run? Could this be something metabolic? Should I start reading up on that seizure diet (which really pains me to say, but this time, the diet solution would be based on something we actually know she has and not something someone read off the internet, lol!)

I am not thinking "Oh, we'll finally know what's causing the problems!" because I still don't know if we'll get anything other than "Maura Syndrome" for her. But it is very apparent to everyone that going on seizure meds have cleared up her brain a bit. The progress has been unbelievable for Maura. Heck, I may even get her potty trained before she's ten! LOL!
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#2 of 6 Old 02-07-2008, 08:47 PM
 
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I think she needs a VEEG if she hasn't had one. And maybe w/o the meds. A good ped epileptologist COULD dx something based on this. If it clears so quickly from her system, you could have back on meds after this.

Did she have an MRI? MRS?

Do you know what kinds of labs were drawn? Lactic acid, ammonia, ca, mg, etc etc. There are labs related to seizure activity.

As far as the ketogenic diet, my answer is no. But I'm not you.

Read up as you will, but if you think there is any chance it's metabolic, it's a very dangerous diet, especially for a little girl.

And hey, I thought you said no more genetics. Metabolics IS genetics.
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#3 of 6 Old 02-07-2008, 08:49 PM - Thread Starter
 
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Why I outta!
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#4 of 6 Old 02-07-2008, 08:52 PM
 
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Come on though, you didn't answer my questions.
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#5 of 6 Old 02-07-2008, 09:05 PM
 
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Quote:
Originally Posted by peekyboo View Post
and her teachers noted how some days she'd be on, other days she'd be off - but not in a stubborn, didn't want to do it way, but more out of it, tired way.
This is Andrew. And for him it looks to be that these are metabolic down times. (gosh I hope they aren't seizures, his EEG was clear). I do think metabolics needs to be looked into.

And then you get to ketogenic. I've run into an awful lot of mito kids who were put on that diet not knowing about mito and went downhill horribly. Lots of metabolic things have to do with fat processing. We put Andrew on a really high fat diet at the suggestion of his doctor for weight gain not knwing about his metabolic/mito issues and it was absolutely horrible for him. So with unknown metabolics I wouldn't do that diet. A skin biopsy would tell you alot about her metabolic fat processing ability.

Rachelle, mommy to 8 year old boys! 

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#6 of 6 Old 02-07-2008, 09:10 PM
 
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One really needs a VEEG to know if one is "clear." Seizures can also be notoriously hard to get.
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