Progression

[joan]

My daughter mentioned last night and I dont know if its true. I dont even know why I didnt think about it BUT does epilepsy get progressively worse? Does it matter if it genetic Es or acquired Es. I dont know why I never thought of it but last night it hit in me in my sleep. Does E progress to worse-er?

joan*

 

[sixpack]

it depends on the person.

my daughter's has most definitely progressed.

 

[joan]

I figured as much. I am still semi new to this and the amount of info is overwhelming. I only have my son to gage by. With him, he's only been actively E, as I call it, for 4 years. I don't think I see his getting worse. He does very well on lamictal and when taking his meds, has no problems. We have gone as long as 18 mos seizure free then he'd slack on the meds and have a problem. His grand mals are very long usually 5 - 12 minutes and then a 24 - 48 hr recovery. I "think" he finally gets it and it taking his meds very well. He's on the upswing and feeling better.

My daughter started with slight myoclonics... so subtle we missed it for a year. When I saw it this past summer for the first time, it was really bad. It lasted, on and off 12 hours. She has myoclonics normally every day. Since starting lamictal it has gotten better. She is not at therapeutic dosage yet. Now Friday she had a horrible day at school with her myoclonics, I asked her if she wanted to come home but she decided to stay. After school she still had the myoclonics, looked tired and pale. I suggested she rest and maybe take a nap. Either while trying to fall asleep or right afterwards she had a grand mal at 630ish... Now I wonder if the myoclonics are the warning sign of grand mal to come? She's also mentioned waking on her floor twice in the past few months. I now "assume" they were grand mals as well as she's never fell out of a bed before.

I'm calling the Dr tomorrow. She's had a good Saturday and so far Sunday.

Thanks for the feedback* and I hope your daughter has a good day today and a better day tomorrow*

joan*

 

[RobinN]

Joan, I think this thread has a lot of great ways to control seizures, and to stop the kindling pattern that can occur over time:

http://www.coping-with-epilepsy.com/forums/f22/unkindling-behavior-mod-seizure-control-1682/

I also highly recommend the book:
[ame="http://www.amazon.com/Epilepsy-New-Approach-Adrienne-Richard/dp/B001JJBOBU/ref=sr_1_1?ie=UTF8&s=books&qid=1228667484&sr=8-1"]Amazon.com: Epilepsy: A New Approach: Adrienne Richard, Joel Reiter: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51KPWHRCFTL.@@AMEPARAM@@51KPWHRCFTL[/ame]

 

[drarvindr]

Dear Joan ,
Maybe , maybe not. As sixpack said , it depends on the person. Some people grow out of their seizures . I started out with atonic seizures , then got absence seizures then myoclonic , then tonic clonic and now back to myoclonic , over a 13 year history of epilepsy. Whether this progression was "worse" or "better" I don't really know. After all a seizure is a seizure. Everybody is different . A good example is a study that was done recently on twins that had neurofibromatosis. One twin only had a few light patches n his body , his brother developed full blown plexiform neurofibromatosis (see the movie "elephant man" . He had this disease). How people who are by all accounts identical could have such radically different manifestations of a disease is unexplained.
Don't worry too much about what will be. I'm sure you will be able to deal with the various curveballs life throws your way.
Cheers,
Arvind

 

[Ann T.]

Hello, Joan

I've had highly med resistant complex partial seizures w/ 2 or 3 tonic-clonics since 1990. I have noticed that my memory has faded when trying to recall certain events during family conversations: "Hey Ann, remember when..." but this is the only noticeable aspect of my epilepsy that drives me absolutely crazy. I hope & pray everyday it doesn't get worse...Take care, Joan! ~Ann

 

[Molly97]

Joan,
My experience is that the seizures change, sometimes for worse for a while, and then for the better for a while. I think for me that's connected to what else I'm doing. Am I eating a "seizure friendly" diet, am I exercising, am I getting good sleep, am I under some stress at the moment? It's all connected.

 

[joan]

Thank guys * It means alot that you all share*

What Im trying to figure out is .. my kids are genetic Es. The E shows up at puberty. why? what else changes then? hormones.. so Im thinking IF we could get their hormones in balance.. maybe just maybe... They had been sick before puberty, had stressful times, didnt sleep well.. etc., but had no seizures. What changed that threshold? Im having them both allergy tested for foods and then were moving to a diet that will be condusive to them doing their best.

I do appreciate you all sharing. It is very generous of you all.

sincerely
joan*

 

[TeeTees]

Hi Joan,

My sz's were terrible when I was a li'l baby, and continued this way until I was around 10/11ish. By then, the Doc's had found what works for me, and so were able to completely calm down the sz's, so I was only having 1 every year or two.

However, times have changed again, and I'm having 1 every month or so at the moment.....which isn't too bad actually when you a) read what others are going through, and b) relate to the fact that I was having around 4 every two weeks earlier this year.

So, do sz's get worse with age ?.....nah, I don't think so. Maybe it's an individual thing, maybe not. But in my opinion, it really depends on what kind of lifestyle you choose (ie. drugs, alcohol, late nights, bad diets are all NOT going to help).

 

[joan]

What scared me was, she had the myoclonics all day, then the grand mal. But when the grand mal was over she was still having the myoclonics. The EMT gave her a shot of adopan (?) and that stopped them right away. What is that anyway? She hasnt had any myoclonics since. Ive already put a call into her Dr so I should speak to him tomo. Im also going to tell her that if her myoclonics are happeing a few hours into the school day she should come home. I dont want her having a grand mal there. At least till we get her settled. My home here much more E friendly. Im also wondering where my son seems to be "safe" after the first 3 hrs of waking, Im wondering if hers going to be more nighttime? So I am able to figure out a "safe" time. I always loved difficult puzzles but this one the master.

Im living and learning.
Thanks guys
joan*

 

[Molly97]

Joan,
See if you can hook up with RobinN on this site. Her daughter has a history of her hormones being out of whack. There are seizures related to hormones.

 

[RobinN]

Gosh... my daughter has only had tonic clonics and they tend to happen during the day. So for the most part they have happened at school. Not fun, but somehow she keeps on truckin'. I would have to put her in a bubble if I wanted to protect her from E.

Rebecca's neurologist is a specialist in hormonal seizures.
Rebecca has been prescribed bio-identical progesterone, magnesium and neurofeedback. All have contributed in an incredible reduction in seizure activity.
All the other bio-med alternatives I do on my own, from research.

 

[brain]

My daughter mentioned last night and I dont know if its true. I dont even know why I didnt think about it BUT does epilepsy get progressively worse? Does it matter if it genetic Es or acquired Es. I dont know why I never thought of it but last night it hit in me in my sleep. Does E progress to worse-er?

joan*

I have progressive Epilepsy, but those types are very rare.
Your Doctor will run tests and would have notified you in
person if the type is a progressive type of Epilepsy.

This is different from Epilepsy that may or may not grow
worse when a child enters into puberty, but on the flip side
of the coin; the child can also phase out of Epilepsy as
they stop growing and Epilepsy just goes away, but to
others, it mellows out, or it stays put.

Then there are Epilepsy that just vanishes, and only to
reappear later on in life, like in 30s, 40s, 50s, etc - in
other words, returning back to haunt them, and in some
cases, making the latter end worse than it was in the
beginning. It is not understood, for after all those years
of being seizure free, of why it returned; it may have to
do with "aging", "hormones", or other causes.

There are many reasons why that could be the factor and
issues as well - such as having other health issues.

So the generalization as a whole entirely, is vast - you
are inquiring something that the answers would be so
great that I could tell you to go outside in the middle of
the clear night and look at the universe and count all the
stars out there and you know there are more that are
uncounted for! That would be your answer right there!

 

[sixpack]

Thank guys * It means alot that you all share*

What Im trying to figure out is .. my kids are genetic Es. The E shows up at puberty. why? what else changes then? hormones.. so Im thinking IF we could get their hormones in balance.. maybe just maybe... They had been sick before puberty, had stressful times, didnt sleep well.. etc., but had no seizures. What changed that threshold? Im having them both allergy tested for foods and then were moving to a diet that will be condusive to them doing their best.

I do appreciate you all sharing. It is very generous of you all.

sincerely
joan*

It is fairly common for seizures to start at puberty. It is likely that, IMO, that the hormones are what trigger E, atleast at the onset. My daughter's brain abnormality is the primary cause of her seizures. We were told she would likely start having seizures by the time she was 2yrs old. Hers didn't start until she was 13. Actually soon after she got her first period within 3 months anyway. I was actually shocked as I figured she wouldn't get them after so many years had passed. Hers don't seem to be influenced by foods or sleep issues. Honestly some nights she'll be awake all night and not have a seizure as a result. I do know that often if she has a seizure or two during the day she won't sleep that night. We do see more around ovulation and menses. We tried the BCP. The BCP only caused more seizures. I also understand that isn't unusual either.

I do know that her seizure disorder has progressed though. It is common for people with this brain ab. to have intractable seizures. When she first had her seizure, her EEG had a single focus activity in the area of the brain abnormality. Two subsequent EEG's now show general seizure activity all over with the primary starting points in the occipital, temp lobe and parts of the parietal on the other side of the brain.

I hope you will be able to find a pattern of seizures with your kids and perhaps control the triggers. That would truly be wonderful.:woot: