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AnnaM

AnnaM

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My son who is 3 just had another EEG today (sleep deprived this time) ..All 3 EEG's were normal. His doctor said she feels his seizures are coming from 'deep within' and that no further EEG testing is needed I suppose because they won't catch it, or maybe it would be to difficult to do? not sure. I am a bit worried about this to say the least...How do I know what to expect regarding my sons future without knowing for sure what type of seizures he is having? His seizures being 'deep within' ...Is this a worse? I have a consult/general appt with her Jan 16th to go over this, but would like to stress less between now and then. Any help out there?

Thanks in advance..

Anna
 
The type of seizures your son is having depends on what he does during the seizure. Does he space out, twitch, convulse etc.

What is actually causing the seizure is secondary to how his seizures react to various treatments and there really is no better or worse part of the brain for someones seizures to originate that I'm aware of.

I was born with my seizures & was 39 years old before they discovered the lesion (deep in the brain) on the hypothalamus that is thought to be causing my seizures. It still made no difference in how any of the neurologists I've seen have treated it.
 
Thank you so much for your reply! Interesting you bringing up the hypothalamus...The geneticist my son saw, and his neuro both believe he has a problem there. Seeing a pedi endo Jan 6.

Above said, my son had an MRI and CAT scan. Both showed nothing. CAT was to look for tumors, and MRI was to look for anything related to a mitochondrial disorder. What test showed your lesion on the hypothalamus?
 
It was a CT scan but I'd had numerous ones before that showed nothing.

When I was younger I used to laugh during my seizures (we called them laughing spells). Just a few days ago I read that that is a sign of the seizures being related to the hypothalamus. Does your son laugh during his seizures?

Gelastic epilepsy, a rare condition characterized by laughing seizures, is commonly the result of a congenital brain lesion (called hamartoma) within the hypothalamus.
Click to expand...

http://www.epilepsyfoundation.org/news/Study-Zeroes-in-on-Nuclear-Anatomy-of-Laughing-Seizures.cfm
 
Not that I have seen...A few times he cried...Not the norm kind of crying tho..Deep breath in than a whine cry (not sure how else to describe) than stop, than again, than stop...not sure how many times, than onto the next phase of the seizure.

Doctor felt 2 seperate issues were going on..reason he needs to see endo. His body temp does not regulate normal (down to 94 when it was 93 outside) and he sweats inappropriately...(clammy skin as soon as he hits the outdoors..litteraly. Sweats when its low 40's outside (hair wet) ..He is not overdressed, no hat or gloves....None of us are sweating (myself, husband, younger son) ....
 
AnnaM said:
His body temp does not regulate normal (down to 94 when it was 93 outside) and he sweats inappropriately...(clammy skin as soon as he hits the outdoors..litteraly. Sweats when its low 40's outside (hair wet) ..He is not overdressed, no hat or gloves....None of us are sweating (myself, husband, younger son) ....
Click to expand...

As for the sweating, you just described me to the T. I sweat with ANY temperature change whatsoever, hot or cold - whether I am walking out of an air-conditioned store into a 90-degree heatwave - sweats; whether I am walking from a warm and toasty house into a frigid, 32-degree, blustery winter's day - sweats. Stepping out of the shower often triggers sweats, even in the winter when I should theoretically be shivering. Damp humid air, whether it's warm or chilly out, seems to be a trigger too.

In the spring and summer, I sweat so inappropiately, so excessively that neighbors comment because sweat is literally gushing down my forehead to where I have to run inside and clean my glasses to see. During the night I will often wake up drenched, so much so that even my husband is saturated. The other night I sweat so heavily that the lotion I'd applied to my hands the night before had liquified and my husband's shirt was VISIBLY saturated in my sweat. Another odd trigger I've noticed - whenever the heater 'kicks' on, within 3 seconds of this happening (no exaggeration, long before any temperature change has occurred in the room), my body turns the sweat faucets 'on'.

Where exactly does your son sweat 'from'? I find that the upper body - base of my skull/nape of my neck, the center of my chest (between the breasts), my back, and my hands sweat the most, though occasionally my groin and the backs of my knees will get involved if it's especially severe.

No doctor has yet to refer me to any endo? I guess because I'm 46 it's easy for them to blame this all on my dwindling hormones, even though I've been sweating for at least 15 years (and counting)? No matter what my doctors say, I know these sweats are seizure-related - somehow. If you do take him to an endo, let me know what they find. Good luck.
 
Skull/nape of the neck...If hot out his head starts to feel itchy as soon as he hits the air. His arms are clammy immediatly. Also, during hot weather he will sweat like someone dumped a bucket of water over his head within 5 minutes..just dripping. I will need to check the rest of his body when this happens to see where else the sweating is occuring. I am surprised they did not send you to an endocronoligist! I will let you know what my sons says as soon as I know...hopefully 'something' to share the eve of the 6th of January.
 
It's the anterior of the hypothalamus that regulates body temperature, sweating, & panting so what you've described makes sense that they're all effected
 
Thank you! Please let me know what they find. They never say it outright, but their impression with me seems to be that my sweats are simply 'hot flashes' because I'm 46. And the only doctor they ever refer me to when I bring this up (and usually with an 'oh, you poor thing, getting old' smile) is a GYN. What they aren't 'getting' is that the sweats I get are excessive. I soak my hair. And yea, everybody might sweat on a humid summer day, but they shouldn't be sweating so heavily (at rest or when doing only light activity) that they have to go clean their glasses off so that they can see.

I've noticed too that my sweat is...?...greasy? I hate it too because it almost always happens after a shower, even in the winter. It's kind of creepy...
 
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