New update - Epilepsy

[creekland]

The start of this is here:

 

http://www.welltrainedmind.com/forums/showthread.php?t=371399

 

New Update:

 

Just got the call from the Neurologist after today's EEG and it IS some form of "Generalized Epilepsy" as per the sleep deprived EEG. Words I wrote down include "Juvenile Myoclonic Seizures" He had some twitching during the EEG both while awake and asleep, but not a whole episode (though a little bit close at times).

 

He was conscious through it all (though asleep for 20 minutes or so). He's always been conscious through even the 45 minute long episodes.

 

Our next appt is next Monday and we're still going to try to film a major episode should one occur between now and then. At this point, I expect one in the next couple of days (based upon the previous cycles and the twitching increasing lately).

 

Anyone want to point me to a website for learning about this all? It sure doesn't match any epilepsy I've seen or heard about.

 

How does this all start? He's 16 and never had anything like it before.

 

Medication is in his future, but we're waiting until the next appt to discuss options.

 

Any thoughts? Any experiences? This test was supposed to be a formality to show what he had wasn't epilepsy... so much for that.

[cbollin]

no experience or advice.

 

just :grouphug: and glad you posted the update.. I had been thinking and praying for you and will continue...

 

-crystal

[snowbeltmom]

No adivice either.:grouphug: My neice was diagnosed, but she was around 5 or 6 when she had her first episode. She has not had a seizure since she was started on medication. She is ten now.

 

:grouphug::grouphug::grouphug:

[Angie in VA]

:grouphug:

 

No advice, other than to mention this that I saw on tv years ago that starred Meryl Streep. I just looked it up, it's called First Do No Harm.

 

I only mention this to you b/c you're a smart mommy who'd never blindly follow or believe what someone on a message board says about a made-for-tv movie from 15 years ago. You'll do your own research, and work w/ your dc's doctors.

 

More hugs.

 

:grouphug:

[twinmami01]

:grouphug: As a mom to twins(11) with a history of epilepsy, I know first hand how heart breaking this is. I will be praying for you and hoping all goes well.

[Halftime Hope]

Creekland,

 

I'll continue praying.

 

I'm so sorry it isn't the good news we were hoping for.

 

:grouphug:

[Murmer]

My dd was diagnoses with epilepsy in sept...we had no idea we did the EEG to rule out epilepsy and then the results said seizures increasing during sleep...there were no signs other than violent behavior that would turn on and off in instants....all that to say I think the common understanding of epilepsy is common but does not mean every single person with epilepsy does the common and there are outliers like my dd and possibly your son...the meds have changed my dd's life for the better and mine too

[Jean in Newcastle]

I'm glad that you have a diagnosis. :grouphug: during this time of getting it under control.

[Twigs]

:grouphug::grouphug::grouphug:

[Penny from Tenny]

First....:grouphug:

 

I'm sorry that you are having to deal with this. However, there are some wonderful meds out there that were not available even a few years ago. My son (26) who is severely disabled, so I would not compare, has a severe form of epilepsy including myoclonic seizures. Myoclonus is something that all of us experience when we are half-awake/half-asleep; it is that uncontrollable jerk that you sometimes feel when you are falling asleep. Myoclonic seizures are just that, but due to a misfiring in the brain. Fortunately they only last a second or so, but they can cluster. Generalized seizures just means that they are basically traveling between both hemispheres as opposed to partial seizures which do not involve the whole brain.

 

Again, please don't compare, but our son was having thousands of myoclonic seizures a day (I know!) and he was able to get a vagal nerve stimulator back in 2000 that controlled all of his myoclonic seizures.

 

In time you will be able to figure out things that may trigger or precede a seizure so that will be helpful. Each individual is different in this regard. And he may just be going through a period where these misfirings are happening, and then they may just stop.

 

My son's case is complicated, and I surely wouldn't want to come across as knowing about your son's situation or even how you are processing this news because I only have my experience from which to draw. Mainly I just want to encourage you that it will be o.k. and that having a good neurologist will be a lifeline to you through this process.

 

Hang in there and my prayers are with you at this time as I've thought of your situation since it was first mentioned. Please feel free to message me if there is anything I can help with.

 

Blessings,

Penny

[Gwen in VA]

:grouphug:

 

I'm glad you have a diagnosis, but this will not be an easy road. I'm sorry. My prayers are with you and your family.

[Teachin'Mine]

I'm glad that you have a diagnosis. :grouphug: during this time of getting it under control.

 

Yes exactly. Now at least you know what it is and there is treatment. :grouphug: Continuing to pray - for wisdom for all of you and the docs.

[Trilliums]

 

In time you will be able to figure out things that may trigger or precede a seizure so that will be helpful. Each individual is different in this regard. And he may just be going through a period where these misfirings are happening, and then they may just stop.

 

This happened to a young lady our family knows. The seizures ended within a few years.

 

Sending you and yours warm wishes of well being.

 

:grouphug::grouphug:

[regentrude]

I am sending good wishes for you and your son.:grouphug:

[Kareni]

I am sending good wishes for you and your son.:grouphug:

 

More good wishes from here.

 

Regards,

Kareni

[creekland]

First....:grouphug:

 

I'm sorry that you are having to deal with this. However, there are some wonderful meds out there that were not available even a few years ago. My son (26) who is severely disabled, so I would not compare, has a severe form of epilepsy including myoclonic seizures. Myoclonus is something that all of us experience when we are half-awake/half-asleep; it is that uncontrollable jerk that you sometimes feel when you are falling asleep. Myoclonic seizures are just that, but due to a misfiring in the brain. Fortunately they only last a second or so, but they can cluster. Generalized seizures just means that they are basically traveling between both hemispheres as opposed to partial seizures which do not involve the whole brain.

 

Again, please don't compare, but our son was having thousands of myoclonic seizures a day (I know!) and he was able to get a vagal nerve stimulator back in 2000 that controlled all of his myoclonic seizures.

 

In time you will be able to figure out things that may trigger or precede a seizure so that will be helpful. Each individual is different in this regard. And he may just be going through a period where these misfirings are happening, and then they may just stop.

 

My son's case is complicated, and I surely wouldn't want to come across as knowing about your son's situation or even how you are processing this news because I only have my experience from which to draw. Mainly I just want to encourage you that it will be o.k. and that having a good neurologist will be a lifeline to you through this process.

 

Hang in there and my prayers are with you at this time as I've thought of your situation since it was first mentioned. Please feel free to message me if there is anything I can help with.

 

Blessings,

Penny

 

Thank you for relating all of this and :grouphug: for you and your family as you've dealt with it all too. I really appreciate the definition of the new vocab words as I really didn't know what those meant.

 

I still wonder how his major episodes fit in as they aren't fitting in anywhere online where I read about this. The twitching fits. I've found it's considered genetic though both of our families would have had to be carriers since no one knows of anyone who's had this. But the 45 minutes to hour long episodes where he's fully conscious just don't fit anywhere. They must be cluster firings, but why so many and for so long?

 

We were able to joke with youngest a little last night. I told him he might get into the medical journals before his brother has a chance to publish anything. ;)

 

Youngest wasn't taking it well and was adamant about not wanting any meds. I think he lightened up a bit when I asked him if he'd think any less of her if it had been his girlfriend instead of him (or hubby or I). He quickly said, "No." I then told him that in the same manner, no one is going to think less of him. Medical issues are medical issues and we all understand them. I'm really hoping that clicked in his mind. I'll know more later (I think).

 

We're off to school today. I don't know if we're on high alert for an episode or if yesterday's induced seizures put it off a little bit. Time will tell I suppose.

[Mommyfaithe]

:grouphug::grouphug:

 

A girlfriend of mine developed epilepsy after a horrific car accident. She went on to get married, have 2 beautiful children graduate from school etc.

 

I am not sure if your ds's epilepsy has to do with his head injury, but I just wanted to encourage you, that my very close friend went on to have, not just a normal, but super successful life.

:grouphug::grouphug:

 

Faithe

[Matryoshka]

:grouphug::grouphug:

 

I still wonder how his major episodes fit in as they aren't fitting in anywhere online where I read about this. The twitching fits. I've found it's considered genetic though both of our families would have had to be carriers since no one knows of anyone who's had this.

 

If they know it's genetic, do they know if it's dominant or recessive? I had tons of seizures when I was an infant, was medicated, then outgrew them. Didn't think anything of it till my kids were born, and they had seizures. Now we've had our genes sequenced, and it turns out it's a genetic condition called benign neonatal seizures, and it's a dominant gene. No one in my family has this - I'm a mutation. Since it's dominant, I have a 50/50 chance of passing it on to any of my kids, and so do they (yes, I beat the odds and all 3 of my kids got it). If a gene is dominant, the other side of the family doesn't have to be involved. And mutations happen all the time (although a recessive mutation wouldn't have shown up first generation like it did in me).

[brendafromtenn]

Just quickly, I was diagnosed with epilepsy when I was around 14. Had seizures on the first day of my monthly period. (Talk about a hormone overload!)

 

There was also a connection with not getting enough sleep. Staying up late was a "no-no" for me. Still is for that matter....

 

So, hormones/lack of sleep were the cause of my seizures during puberty. Once I hit adulthood, I grew out of them.

 

Looking back, my seizures also happened in the early morning, so there could have been a Low Blood sugar connection to them also.

 

I was on Meds for about 10 years.

 

There is hope. And a God who heals.

 

Praying for you and your family.

 

Blessings,

 

Brenda:001_smile:

[Penny from Tenny]

Just quickly, I was diagnosed with epilepsy when I was around 14. Had seizures on the first day of my monthly period. (Talk about a hormone overload!)

 

There was also a connection with not getting enough sleep. Staying up late was a "no-no" for me. Still is for that matter....

 

So, hormones/lack of sleep were the cause of my seizures during puberty. Once I hit adulthood, I grew out of them.

 

Looking back, my seizures also happened in the early morning, so there could have been a Low Blood sugar connection to them also.

 

I was on Meds for about 10 years.

 

There is hope. And a God who heals. This...definitely.

 

Praying for you and your family.

 

Blessings,

 

Brenda:001_smile:

 

 

:iagree: I can't tell you how many times I've heard this similar story when our son was in the hospital or the EMU (epilepsy monitoring unit). Praying for more answers and help as you work through all of this.

 

Blessings,

Penny

[Karen in CO]

My nephew has seizures. Years ago he was diagnosed with ADHD and dismissed. As he reached his later teens he started having absence seizures which became progressively worse. It took months of advocacy from my sister to get him to a neurologist who promptly diagnosed him after a short hospital stay and extensive tests. He is 100 times better than he was. We had started to fear that the seizures would continue to get worse, but once he was on the proper dose of the proper medication they have almost gone away completely. He is even driving again.

 

:grouphug: It is a hard path from here to being comfortable again, but a diagnosis is a good place to start.

[Teachin'Mine]

Thank you for relating all of this and :grouphug: for you and your family as you've dealt with it all too. I really appreciate the definition of the new vocab words as I really didn't know what those meant.

 

I still wonder how his major episodes fit in as they aren't fitting in anywhere online where I read about this. The twitching fits. I've found it's considered genetic though both of our families would have had to be carriers since no one knows of anyone who's had this. But the 45 minutes to hour long episodes where he's fully conscious just don't fit anywhere. They must be cluster firings, but why so many and for so long?

 

We were able to joke with youngest a little last night. I told him he might get into the medical journals before his brother has a chance to publish anything. ;)

 

Youngest wasn't taking it well and was adamant about not wanting any meds. I think he lightened up a bit when I asked him if he'd think any less of her if it had been his girlfriend instead of him (or hubby or I). He quickly said, "No." I then told him that in the same manner, no one is going to think less of him. Medical issues are medical issues and we all understand them. I'm really hoping that clicked in his mind. I'll know more later (I think).

 

We're off to school today. I don't know if we're on high alert for an episode or if yesterday's induced seizures put it off a little bit. Time will tell I suppose.

 

 

I think you son is very lucky to have you as a mom. You're doing an awesome job. :grouphug:

Edited April 26, 2012 by Teachin'Mine

[lisabees]

Oh Creekland, I am so sorry your family have to go through this. :grouphug:

 

Now that you're not in the dark anymore, I know you will research and get your son the best care there is. That's why he will be just fine.

 

Please know that I think of you often and will be here if you need anything. Feel free to PM if you need to vent. So many changes going on in both of our lives...

[plansrme]

I think he lightened up a bit when I asked him if he'd think any less of her if it had been his girlfriend instead of him (or hubby or I).

 

Wow, that was brilliant. Truly, my hat is off to you. Best of luck as you figure this all out.

 

Terri

[Miss Marple]

:grouphug: I am so glad you are getting answers. I'm sure it is making your son feel much better as well knowing that he "isn't crazy" (my son's word when he had something weird that was difficult to diagnose). I hope you get it all ironed out soon and they find meds that take care of everything with little side effects.

[memphispeg]

I've been away for a few days. :grouphug: looks like good progress has been made. Hope you and your ds get this resolved quickly and easily. With everyone's vigilance and love, this too shall pass!

Just a question, can you get him to "journal" his day on his own? Even on an iphone or such, just little notes about what he is doing, thinking and feeling say every hour on the hour? You/he could get an idea about triggering and he might feel more empowered that he is "doing something". It also might help him to relax about the whole ordeal.

Hopefully, he's getting out and having some "normal" fun during all of this too?

Again - :grouphug:

[creekland]

I only have 5 minutes before kids come in for my next class and have been reading a bit on this thread.

 

Thank you all for thoughts and the true related stories. You have no idea how much they have meant to me. This board is awesome for its depth of experience and willingness to share, not just about homeschooling and college or whatever, but general life.

 

This is so brand new to us, and it helps to know there are those who have been there, done that, at least a little bit. I'm still looking for someone with experience with the whole big episodes he's having... the one that makes the doctors and everyone go, "what the ___?" ;)

 

He seemed much better this morning and (I think) is gearing up to putting his whole Aspie brain into researching all he can about this when he has a little bit of free time.

 

He is keeping his regular schedule of events. Not doing so would be worse for an Aspie. Me? I'd want to cocoon in and learn and would be worried about when the next episode comes. Him? He wants life to progress as normal... We're letting him (as much as we can).

 

Gotta go. My 5 minutes are up.

 

Thanks all!

 

Oh yes, recessive gene (they think).

[Pam L in Mid Tenn]

:grouphug:

I have been praying for you, your son, and family as the Lord brings you to mind.

Thanks for the update.

[mumto2]

:grouphug:it is good to have a diagnosis to work with. Now you know -- you can learn.

 

This is not being said in a negative way but since his symptoms are not matching your research--remember you can switch to a new specialist if things are not going properly in your opinion. I am a firm believer in trusting your doctor. You must really feel that they are right. If you don't feel a high degree of confidence consider switching down the road. I know almost nothing about epilepsy so I am saying this in a general. There have been several bad medical situations in my life that being matched with the right Doctor made a huge difference in the outcome for my family-- we have switched.

 

It sounds like you are doing a great job helping your son deal with this. He is lucky that you are his mom!

 

:grouphug::grouphug::grouphug:

[Candid]

As far as it coming out of the blue, one of my mom's cousins was married to a man who had a grand mal seizure his first of any kind at 50, so I think it can arise without cause.

[creekland]

:grouphug:it is good to have a diagnosis to work with. Now you know -- you can learn.

 

This is not being said in a negative way but since his symptoms are not matching your research--remember you can switch to a new specialist if things are not going properly in your opinion. I am a firm believer in trusting your doctor. You must really feel that they are right. If you don't feel a high degree of confidence consider switching down the road. I know almost nothing about epilepsy so I am saying this in a general. There have been several bad medical situations in my life that being matched with the right Doctor made a huge difference in the outcome for my family-- we have switched.

 

It sounds like you are doing a great job helping your son deal with this. He is lucky that you are his mom!

 

:grouphug::grouphug::grouphug:

 

The small twitchings mostly match JME (the type it's supposed to be). It's the larger episodes that just don't appear to match. We'll be asking questions about those, but I'm not sure answers are out there. (Why do they last so long? Why is he remaining conscious during them when "typical" epilepsy is short and unconscious?)

[Penny from Tenny]

The small twitchings mostly match JME (the type it's supposed to be). It's the larger episodes that just don't appear to match. We'll be asking questions about those, but I'm not sure answers are out there. (Why do they last so long? Why is he remaining conscious during them when "typical" epilepsy is short and unconscious?)

 

 

I really wouldn't let the longer episodes throw you because myoclonic seizures can do just that when they cluster. Our son's did anyway. There are so many different "types" of seizures, but the good thing about myoclonic seizures (if you can look at it that way) is that there is no further damage to the brain like there can be from other types. I won't be surprised at all that these go away with time and that they have started due to the head injury (am I remembering this correctly...I'm a little sleep deprived today?)

 

Hang in there, and for what it's worth, I think you are doing a great job with helping your son deal with this.

Blessings,

Penny

[Gratia271]

I am grateful for all of you that you have some answers. We will keep praying for you.

[Nan in Mass]

Hugs and best wishes. I think your son is lucky to have been born into your family. You have dealt with the homeschooling process and the college process in such a very thoughtful, thorough, individualized way and you have a strong family. I am sure you will approach this in the same way.

 

Nan

[Hoggirl]

I have been following this here and some on cc. :grouphug: for you and your family and prayers that doctors will find appropriate treatment/medications for your ds.

[Jane in NC]

Sending your son as well as you and your family best wishes. Keep us posted, please!

[creekland]

I'm actually thinking the Aspie brain has it right. I'm doing much better staying on a schedule and getting things done too. When I'm home and not doing things, my mind has difficulty thinking of much else.

 

So far, no "episode 4." I'm wondering if the stimulation of the EEG took off the stress or if there is no pattern. I decided earlier today that what I REALLY want is the Answer Key to the brain so I can look up all the questions I don't know the answer to... The internet helps, but it's not quite letting me find what I'm looking for.

 

My biggest worry with him is an episode where no one is around who knows what is going on. School knows. Our family and close friends know. If he stays in those circles or with family, we'll be ok. I don't want one to come at night when we're asleep.

 

But yes, we do firmly believe God is in control and that knowledge helps a ton with letting go. It also helps that it's not supposed to be life threatening.

[creekland]

Night seizures are common to some people. It's not a big deal if they are in safe position.

 

As far as typical, it's not typical of all forms of epilepsy to have a short seizure and become unconscious. I've encountered 2 people on public busses having grand mal seizures; neither went unconscious, one was confused afterwards, one was not. One lost control of bladder, one did not. Another person I met needed to sleep deeply after a grand mal. Another did not. Most adults have had basic first aid training and know what to do.

 

With his short seizures - the twitchings - or even if he had typical epileptic seizures I really wouldn't be worried. I've had those in my classes, and while scary, they are quick and not terribly dangerous.

 

But, these major episodes - they even scared our school nurse who has FAR more experience with seizures than I have. She was ready to call 911. Those are what have me worried. He hurt his ankle twice on the last one and scraped his hand hitting a wall. They're rather violent and I could conceive him falling out of bed. Lately, I haven't asked him to pick up the clothes around his bed. My brain now sees a cushion...

 

They're apparently some sort of cluster firing and I hope to have more answers after our appt on Monday. I wish we could catch one on film (or he'd have one there) since they're seemingly rare. A big part of me never wants to see one again. In a couple of the short (few seconds) breaks between firings it seriously looked like he had died - the nurse was quickly checking vitals (all normal) thinking the same thing.

Edited April 27, 2012 by creekland

[Nan in Mass]

...He is keeping his regular schedule of events. Not doing so would be worse for an Aspie. Me? I'd want to cocoon in and learn and would be worried about when the next episode comes. Him? He wants life to progress as normal... We're letting him (as much as we can)...

 

Well, there is alive and there is living. There is confining damage to as few areas as possible of one's life as possible. There is taking a break from worrying. There is reminding oneself that there are still lots of good things in the world even if one's own body is betraying one. Hard on mum, though. What about a medical bracelet? And some nice thick throw rugs in strategic places? You could grab them and throw them over unfriendly things, if need be.

 

I have no idea if this is applicable to your situation, but the two adults we know have had years of their lives when they were able to live on their own and work (one as a nurse), and other periods of their lives when the medication seemed not to be working well and they needed to live with someone (parents or siblings) and couldn't work. Then things would shift and they would be ok for awhile. I guess what I am trying to say is that just because things are bad now does not necessarily mean they will always be this way.

 

Hugs,

Nan

[creekland]

Well, there is alive and there is living. Nan

 

This is true and we've definitely been the free range type with regards to our parenting. Right now we're adjusting that to "free range with your brother" (or friends) type. If more time passes without a major episode or if those episodes get controlled, then this too will pass and we can resume our regularly scheduled programming. Until then, it's an adjustment that we're working on. Fortunately, we have a lot of friends we can count on when we need them. So far everyone has been understanding and no one has made him change his schedule except when he was supposed to be watching younger kids (that's understandable). Everywhere he goes we/he has a plan if an episode were to hit. Fortunately, so far, he can feel them coming on, so there's a couple of minutes of a window to get prepared. At the time of this writing, there's only been three major episodes... I've only seen one, but it was enough.

[asta]

In reply to various posts:

 

Seizures due to endocrine problems are common. They don't show up on an EEG the same way JME does, however. Interesting fact: one of the most popular drugs being used for epilepsy today, Topamax, was initially being designed as a drug for regulating blood sugars for diabetes. Along the way, they discovered it worked better for regular seizures than endocrine ones.

 

JME is genetic, but a person does not outgrow it - it is not like neonatal seizures (that can be outgrown). JME is a juvenile onset disorder (puberty) and stays with a person for the rest of their life.

 

Like all seizure disorders, JME can be the base issue (it has a very distinctive pattern on an EEG) and have another type of seizure "layered" on top of it.

 

Not only is there no "typical epilepsy", not all of them cause unconsciousness. Most seizures are short in duration (unless a person is in "status"), but a person may "cluster" (as was mentioned), which is a process where one reels from aura to seizure to post ictal to aura to seizure to post ictal ad nauseum - and to an outsider, it appears as if they are in an hours long seizure, as they are "out of it" the entire time. Research has shown that "seizure rumblings" can start up to 72 hours before they "hit" (kind of like a thunderstorm rolling in), and post-ictal states can remain just as long, so the person can be out of commission for days on end.

 

All seizures are life threatening. SUDEP is always a possibility. As frightening as it is, all patients and their caregivers need to be aware of it, have emergency medications on hand and know CPR. I personally know one person who was saved by an alert partner.

 

Additionally, though I realize you are referring to short seizures not being "terribly dangerous" from a 'fall on the floor and bonk your head' standpoint, they are dangerous to his brain. Every seizure fries neurons in a person's brain; it is a person's own personal ECT (electro-convulsive therapy), which is why one usually sees mood and personality changes in people with epilepsy. If it were a one time occurrence, it would probably work like ECT does - knock a person out of a depression. Only it isn't, so it knocks them back and forth, similar to a person having bipolar disorder.

 

Some good, reputable sites for information:

International League Against Epilepsy - this page has 2 pdfs on it (2010, 2011) discussing the terminology for epilepsies. They seem over technical at first (especially the first one), but they really aren't. These are the criteria that are used to determine diagnoses worldwide. The second one discusses what "makes or breaks" a diagnosis while the first defines the terms.

 

Epilepsy Foundation - this is a very comprehensive site, with definitions, drug descriptions, etc.

 

Epilepsy dot com - I find their forums to be highly annoying, but their main site is probably the best out there for cutting edge news

 

Crazymeds - Full disclosure: I work there (hey, it's in my profile...). The only HON Code certified place on the net that provides first hand user info on neuro meds backed by scientific studies. The basic problem is, your son is considered a pediatric patient, and we don't do peds (or third party in our forums). Why? Because ALL neuro drugs work differently in peds than they do in adults.

 

What it is good for is the easy access to the pharmaceutical patient information sheets (those map folded onion skin things they sometimes bother to put in with your 'script). PI sheets DO address the various side effects, etc. for peds. If your son is put on a drug that isn't on the site yet (it is in the process of a re-do), let me know and I'll get you some info.

 

I hope something in this post helped.

 

 

Asta

[creekland]

Thanks Asta! There's a load of information you've given me, but I'm going to have to wait to look at it when I get some "alone" time - which should be soon - either today or tomorrow. I also want hubby to look at your post.

 

At the moment, his cluster seizures are gone and the twitches are definitely less. He's on Keppra (generic version of it) since it supposedly has the least (major) side effects. I do think he was starting to get depressed and he's definitely been moody, but it's difficult to tell if it's the medicine or him being 16. We were able to have a good talk on Sunday and he appears to be back to normal (making me think it was teen issues). He also got very lightheaded on Monday giving me a bit of concern, but nothing came of it. He used to get lightheaded prior to episodes, so perhaps things are getting better.

 

School has been going well. He has been more tired than normal, but that's expected. We try to let him catch cat naps when he can.

 

I appreciate the time you've taken to give me the info. I really do want to know as much as I can in order to best figure out how he can live a normal life with it all.

[asta]

Keppra has a well documented side effect of depression. SERIOUS depression. As in, doing just fine at one dose, moving it incrementally, and BAM, wanting to die. Keep a close eye on him.

 

It can also make you woozy-tired, especially if it is hot outside. When I was on Keppra, it was combined with a benzodiazepine (I always have to be on a benzo for my seizures), and I can't tell you how many times I simply face-planted on the lawn or where ever.

 

I know people probably think I am an alarmist, but I have been on Depakote, Depakene, Keppra, Trileptal, Lamictal, Topamax, Neurontin, Lyrica, Diamox, Tranxene and Klonopin -- and I've dealt with literally thousands of people who have been on all of those as well as the rest of the AEDs out there. If there is a weird side effect, I've probably heard it.

 

 

a

[creekland]

Thanks again Asta. I don't think you're being alarmist. I think you're being a realist and I appreciate your sharing your experiences with us. I want to know all I can. I'm just not going to share everything with youngest as I don't want him to feel more overwhelmed or depressed. I plan on keeping it all positive with him - while adjusting what we do to try to prevent (if possible) or get help with (if needed) any depression.

 

This morning he seemed upset/depressed again. The last few days he was his usual happy self. He just upped his dosage again Monday night. I'm off to e-mail his teachers now.

[Hannah]

As far as it coming out of the blue, one of my mom's cousins was married to a man who had a grand mal seizure his first of any kind at 50, so I think it can arise without cause.

 

Dh had his first grand mal at 38. In his case there is cause which we discovered with the MRI. He has abnormalities in the bloodvessels in his brain.

 

It took nearly a year of trial and error to get the right cocktail of drugs (our medical ensurance has this protocol of starting with the least expensive meds first), but he has now been tonic–clonic (grand mal) free for four years. He still gets simple partial seizures where he loses his ability to speak, but not consciousness.

 

Keppra has a well documented side effect of depression. SERIOUS depression. As in, doing just fine at one dose, moving it incrementally, and BAM, wanting to die. Keep a close eye on him.

 

This happened to dh. He is also on Keppra and got majorly, very hard to live with depressed. It works to control his seizures, so he opted to stay on the Keppra and to go on anti- depressants in addition. We went through a really hard time until the depression was better as well.

 

For some meds, building up the dosages made him very tired and sleepy. It takes a few weeks to adjust each time. He also complains of memory loss. We don't know if this is as a result of the cavernous angioma that affect the speech or as a side-effect of the meds.

 

.....but I just wanted to encourage you, that my very close friend went on to have, not just a normal, but super successful life.

 

Dh is also living a normal life and he has been able to successfully climb the corporate ladder in spite of his epilepsy.

 

:grouphug::grouphug: Getting the right diagnoses and finding the meds that work is a tough process. Bidding you strength while you and your family find the answers for your son.

Edited May 18, 2012 by Hannah

[creekland]

This happened to dh. He is also on Keppra and got majorly, very hard to live with depressed. It works to control his seizures, so he opted to stay on the Keppra and to go on anti- depressants in addition. We went through a really hard time until the depression was better as well.

 

For some meds, building up the dosages made him very tired and sleepy. It takes a few weeks to adjust each time. He also complains of memory loss. We don't know if this is as a result of the cavernous angioma that affect the speech or as a side-effect of the meds.

 

We may end up going this route. We'll have to see how things go. Right now things are wavering (depression-wise). Seizures appear to be lessened quite a bit at the dosage he just started Monday. His Chem grade is slipping (but he got a problem right that no one in school has gotten correct in 2 years according to his teacher - go figure!), and some friends have reported mood issues, but we've been talking with people - youngest, friends, and teachers are involved - so we'll see what happens. He has good and bad days right now, but his brain is still supposed to be adjusting. Being a teen and having teen adjustments too makes it tougher to know exactly what is causing what, but some of these mood issues definitely weren't "him" before - esp with friends.

 

It's when it seems like nothing can perk up his spirits that I get worried. So far, that's only happened once. He seemed to be better the next day.

 

 

Dh is also living a normal life and he has been able to successfully climb the corporate ladder in spite of his epilepsy.

 

:grouphug::grouphug: Getting the right diagnoses and finding the meds that work is a tough process. Bidding you strength while you and your family find the answers for your son.

 

Thank you, and I do like hearing things like this. Thanks for sharing!

[LostSurprise]

My youngest has Lennox-Gastaut Syndrome, a progressive childhood epilepsy. He has had myoclonic seizures. Some diagnosis have multiple seizure types. JME like LGS can have multiple types of seizures. Starting with one type you can also cluster (have multiple small seizures one after another) multiple types of seizures.

 

From what I've read, seizures are initially classified by consciousness/altered consciousness/unconsciousness. Generally all generalized seizures (myoclonic, tonic-clonic, etc.) bring unconsciousness (or occasionally altered consciousness). If someone is conscious its often classified as a partial seizure. Partial seizures can also 'take over' the brain and become general seizures (meaning one can be conscious during the partial part and then unconscious as it takes over the brain and becomes a general seizure).

 

Any of us can have seizures (and will under the right circumstances), but some people are susceptible to seizures. People who are susceptible (we say they have epilepsy) have different triggers when their bodies feel off or below par. Common triggers are flashing lights, hormonal shifts, big changes in blood sugar, dehydration, constipation, not getting enough sleep, illness, fever, etc. Not everyone has the same triggers. The most susceptible time of day is when one is entering or leaving REM sleep. The brain is kind of in freefall between conscious brain waves and REM brain waves. This makes it easy for neurons to fire aimlessly.

 

We have to watch our son during the first 2 hours of sleep and the 2 hours before he wakes up. That is when he usually has seizures. We watch because seizures, or seizure clusters, which last more than 5 minutes can be dangerous to brain function. They cause developmental delays, make it difficult to concentrate, and affect moods/impulsivity. The brain feels the effect. Most neurologists will give an emergency medicine (often diazepam or ativan) to break up those seizures.

 

Most people diagnosed with epilepsy will find a drug or drugs which work for them on a regular basis and lead perfectly normal lives. All of these drugs have side effects. Everyone reacts to them differently. Its very important that you and your son monitor Keppra closely and change drugs if it is not effective or he is experiencing side effects which make his life uncomfortable or schoolwork difficult.

 

If its hard to find a drug that works, your son may want to think of researching the modified Atkins diet and seizure control. Some people have good luck with that. My son is doing the Ketogenic Diet (Atkins on speed).

 

I wish you both well. Its a big change.

Edited June 18, 2012 by LostSurprise

[creekland]

Thanks for the info. My guy is doing well on the meds. Unfortunately, he forgot the meds one night and that's all it took for the seizures to return (but not a cluster like he'd had before). We're trying hard to remember it every night, but when our schedule changes (like it does in the summer), it sure isn't easy.

 

I'm just glad he's doing well though. In Sept he has another EEG/appt scheduled, and if all goes well, he can go back to driving.

[Teachin'Mine]

So glad to hear the meds are working well. :001_smile:

 

I know he's got a bit of time before he's off to college, but eventually he'll need to remember to take his medicine on his own. Maybe you could help him set up something which helps him to remember? If he's taking them right before bed, then maybe something on his pillow? Or by his toothbrush? Just might make the transition to college easier and less worrisome if he's already taking them independently, and it might help him to feel somewhat in control. Then again, I know it's only been a very short time since all of this began. :tongue_smilie:

[creekland]

So glad to hear the meds are working well. :001_smile:

 

I know he's got a bit of time before he's off to college' date=' but eventually he'll need to remember to take his medicine on his own. Maybe you could help him set up something which helps him to remember? If he's taking them right before bed, then maybe something on his pillow? Or by his toothbrush? Just might make the transition to college easier and less worrisome if he's already taking them independently, and it might help him to feel somewhat in control. Then again, I know it's only been a very short time since all of this began. :tongue_smilie:[/quote']

 

So far he's been great at remembering, but over the weekend, we went to Wash DC for a graduation trip for middle son. When he/we got off our regular routine, that's when they were forgotten... by all of us. Usually he remembers and sometimes we remember to ask - just in case, but all of us got off routine on our second night out. We have to figure out something for that.

 

Or by his toothbrush?

 

This is a teen boy. I'd love to say he has great hygiene and always brushes his teeth, but honestly, this one would have him forgetting fairly often. ;) At home his meds are on a nightstand where he always sees them before heading to bed. We could keep his toothbrush there I suppose... though it might not make a difference with "remembering" to brush his teeth. A girlfriend helps with that, but not necessarily at night.