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Posted 6/6/2007 7:55 PM (GMT 0)
I have crohns and usually post on the crohns forum, but my daughter was just diagnosised with absence epilepsy.  I would like to hear from other parents who are going through this and what I can expect in the next year or so.  Thanks so much!
Posted 6/7/2007 8:13 AM (GMT 0)

I can't really help you with the absence epilepsy.  I was hoping someone would respond, but I guess mostly children have those.  I did search back through some old posts and found something on page 10 from QueensMom from 7-26-2006.  That might be a start for you.  We are definitely here to support you.

Good luck!

Carla

Posted 6/7/2007 12:22 PM (GMT 0)
Thanks Carla! I really appreicate it!
Posted 6/8/2007 12:48 AM (GMT 0)

Hi,

I am currently 21 and was diogniosed with epilspsy when I was 19. I have absense seizures. I have other types of seizures also. It's been a  long road to figure out how to control m seizures but my doctor is switching me over to a new medicine and so far I have had less seizures. So as far as what to expect I would say that you should expect for your child to appear to be "spacing out" from time to time. I think that with any kind of seizure it just takes time to figure things out. But once things are figured out I know that things will be ok. My day to day life to pretty normal. I am going to college, I have a job for the summer, I spend time with my friends...  I am not sure if this is what you were asking for my this is a little view of how my experence with absence seizures has been.

college girl

Posted 6/11/2007 1:11 AM (GMT 0)
Hi -
I'm new to this too. Probably about a year and a half ago I was diagnosed with absence seizures after an EEG. I always thought that I was just spacing out, and that it wasn't anything unusual. My daughters always thought that I was being rude staring at people, and had to get my attention first, then request that I stop staring at whomever they thought was the object of my attention.
When this happens it's like I am just not aware of anything. The diagnosis explains the red lights that I was running, and the times that I had to come to a hard and sudden stop because I hadn't noticed that the traffic in front of me was stopped. Falling down without remembering why, and not doing anything to try to break my fall. I could go on and on. The neurologist put me on one drug that I can't remember, and I broke out in a rash. He then tried Lamictal. When I was taking the Lamictal I started having audio hallucinations.
I went to a local University Epilepsy Center and saw a woman (Dr.) who just spoke with me for a short while, told me to taper off of the Lamictal, and said that what the neurologist saw as epilepsy seizures, both the right and left temporal lobes, some doctors don't consider epilepsy! They call it selective inattention. Whatever it's called, I don't have a Driver's License anymore.
Has anyone else heard anything about selective inattention?
If anyone has had any experience with audio hallucinations, I would really like to find out what their's are like, because I still hear things. Just not the same things that I was hearing when taking the Lamictal.
Sorry this is so long...
And I really will appreciate any input that I receive...Thanks!
Posted 6/12/2007 4:05 AM (GMT 0)
Dear Gracie's Mom,

Thank you for the information. I have to tell you, though, that it isn't my child with the health issues. I am the one. Now 56, I had to stop working; I had a very lucrative career. This has been a real nightmare for me. I just looked up this selective inattention, and it sounds more like it is about children diagnosed with ADHD. So, you're right, I am going to take this further. Like I told my doctor, how could I decide not to pay attention while on a table having an EEG with my eyes closed?
Also, I do have a sleep disturbance, and that could be what the noise is at night. When I mentioned that to the doctor he asked if anyone had ever told me that I was schizophrenic - that would be the only explanation for noises in my head!
I am changing doctors!
I hope that Gracie does well, it sounds as though you are on top of everything, keep up the good work. To be a child (and the parent of one) with this kind of disorder must be difficult...
Posted 6/12/2007 4:06 AM (GMT 0)
Thank you Gracie's Mom. I really appreciate your post. Her neurologist started her on lamictal....I think I spelled that right. Anyway, she has nurmerous seizures a day with the staring off and then she also moves her mouth and smacks her lips. The dr. did tell us that there was a chance that she could have a gran mal, so they went over all of that with us, which hopefully I will never have to use that info.....

What do you think about the lamictal?
Posted 6/12/2007 7:19 AM (GMT 0)

1mother2, I would look for another doctor.  The brain is such a tricky thing.  I would definitely not accept what that lady told you.  I really don't have any answers for you, other than some of our situation is similar.  I am 56 and had to stop working last summer after being diagnosed with epilepsy.  I live in KY and am about 1 1/2 hours away from Vanderbilt University Hospital, which is great.  I did the four day EEG there last August and they captured myoclonic seizures.  Since that time I have had other types of seizures and I have also been diagnosed with tinnitus and hearing loss in both ears.  The tinnitus causes a ringing in my ears that for me sounds similar to crickets chirping.  It is louder at night when everything is quiet and I am trying to go to sleep.  Does any of this sound familiar to you?  I am going back in to see my neurologist later this month because I still do not have the seizures under control.  I am still having a hard time tolerating loud noises in restaurants, not able to go to church because of the music, etc.  I have to be 90 days seizure free before I can drive and haven't gotten there yet.  I can't believe they have actually taken your license completely away without really having a solid diagnosis.  You really do need to get in with a good neurologist that specializes in epilepsy.  If anything I have mentioned triggers any questions, feel free to ask.

Carla

Posted 6/19/2007 6:00 AM (GMT 0)
Howdy,

I have had seizures for the past 15 years, both petite (absence) and grands. My meds were always just for grands so i had to do things to keep myself from having petites. I found that keeping yourself busy and active helps. Also herbs do actually help!! I like to take an energy booster and some lobelia. I also like to make sure my potassium levels are good. All of this has great effects on the absence seizures I have eperienced.

My doctor recently prescribed depakote for my absence wich seems to work rather well, should look into that for them possibly.

Main suggestions, tips and tricks that I have learned for these:

Stay rested and alert.

Dont overwork yourself but try to keep your mind busy.

Find an acceptable medication, epilepsy medications often times have worse side effects than seizures. Make sure that they work well enough and dont hinder your daily life so much.

Learn your triggers/signals. Most everyone I know with epilepsy has a signal that lets them know before a seizure. With petites its generally harder to determine them, mine is losing memory'.

That is about it for now ..... of course talk to your doctor.
Posted 6/19/2007 8:29 PM (GMT 0)
Hello PaulM,

Last week I was at doctor appointments (out of town) all week. I did get a look at the EEG report from which the Dr. diagnosed epilepsy. The seizures I have are Complex Partial - and I don't know what that means. Are they the same thing as Absence seizures?
I really don't know when anything is going to happen. But mostly at night I hear an electrical kind of buzz go through my head. It's really fast. Occasionally, it happens during the day, but it seems to be only when I am extremely distressed.
This has totally thrown my life upside down and out of whack, and I don't know where to go or what to do. ANOTHERDAY, thank you for your advice. The diagnosis of Selective Inattention is from the UCSF epilepsy center...and that is something that I really don't understand. Everything that I have read sounds like it is ADHD.

Really, I sincerely appreciate the feedback and suggestions as I have no where to turn.

Edee
Posted 6/19/2007 8:58 PM (GMT 0)
The differences between absence and complex partial are small but they are different. Sadly epilepsy is one of those types of conditions where there is no silver buller nor exact science. Epilepsy is just anyone who has reoccuring seizures, what causes them etc etc varies from person to person.

If you recently just started developing them than it might be caused by stress and you dont actually have a permament seizure disorder but you are still an epileptic.

As for the differences in the two types of seizures is mainly length, body movement and how much it spreads. An absence seizure is generally shorter, body tenses up and they stare off in space. It is oftenly confused as daydreaming. They tend to be more frequent when the person is fatigued. A complex partial is one where you usually tense up and move your arms. You stare off but generally have an aura (the aura is actually a slight seizure that causes the major one).


If you only have them at night than honestly you shouldnt overly worry about them. You are a human, not a condition. Live your life around things you want instead of epilepsy. It will take time for you to get accustomed to the way everything is but ultimately the worst part of epilepsy for me was me holding myself back. Now its the costs for medications (500/Month).
Posted 6/19/2007 9:53 PM (GMT 0)
Thank you for explaining the difference. It had me very confused. One of the things holding my back is that my drivers license was taken away. One of the things that was happening to me was that I was running red lights, and generally was a menace on the road!
I can relate to your medication expenses holding you back. Since I sold Real Estate, and a car is a very important tool, I can't work!
Do you know anything about "selective inattention?" That is what one doctor said that it is...and I just don't get it!
Thanks, it's good to have someone to talk to - besides my very old cat.
Edee
Posted 6/19/2007 11:03 PM (GMT 0)
Selective inattention ... never heard of it but sounds like they might be using a more polite term for psuedoseizure (aka fake seizure). A psuedoseizure is a "seizure" that is not known to be caused by the brain. A lot of doctors are quick to push off people who suddenly develop seizures or who dont have them regularly enough or severe enough to keep them from being deemed as an epileptic. This helps the patient by being allowed to keep such priviledges as their license.

It sucks about your job. I wasn't able to get a license till I was 21, wasn't able to move out of my mother's house till I was engaged because I wasn't able to live (or well sleep, have nocturnal tonic clonics) alone. Find a medication that helps you do what you have to be able to do. There is many great ones out there but do keep an eye out for side effects. If your doctor is nice and feels you have gotten your seizures back controlled (depending on state law) you should be able to get your license back and your old life back.

Also if you plan on seeing your doctors long term and need to take medications long term, than start studying about insurance laws. Things like COBRA and such would be a great help for you since insurance agencies love to deny epileptics.

*Wow, am typing this at library... normally post from my phone. Is so much easier to type on this*

Posted 6/20/2007 4:29 AM (GMT 0)

Edee,

I totally understand about this epilepsy thing turning your life upside down, believe me.  I've been trying to come to terms with it since last August.  As I've mentioned before, I still don't have my seizures under control.  I do have an excellent neurologist down at Vanderbilt and I'm going back down so see him next week.  It doesn't sound like you have a doctor who will really listen to you yet.  That has to be very frustrating on top of what you are already dealing with.  Not being able to drive is enough to deal with.  Please feel free to email me any time.

Take care!

Carla

Posted 6/23/2007 1:39 AM (GMT 0)
My son had absence seizures and toniclocic seizures.  His seizures went out of control about 2 years ago.  Found a new neurologist.  On his EEG he had as many as 50 absence seizures during the test.  He had to take a leave of absence from work which they had to give him by law.  He is on 3 meds - Lamictal, Zonegran and Keppra.  He was off of driving for 1 1/2 years.  The meds have kicked in really well and his last EEG was clean.  It took a while to get used to the meds but he was brave and stuck to it.  Now the only side effect he has is getting angry easily.  He had been on an antidepressant for several years and the neurologist said this med was adding to the seizures.  Anyway, he is fine now and is driving.  There is hope - you just have to find the right Dr. and try different meds.  My son has been seizure free for 18 mos.

Posted 7/2/2007 8:17 PM (GMT 0)
My son was diagnosed with absense seizures when he was 4and a half. We have tried many different meds and have had the most luck with Depakote. He was doing so well last year that we took him off the meds in September to see if he had outgrown his seizures. He did really good until November and the seizures came back. We tried Lamicital for several months and were never able to get good seizure control with it. He cried all the time and for no reason, didn't stay asleep and had a motor and vocal tic. We have just gone back to depakote but for some reason it isn't stopping the seizures this time. He definetly has side effects from the medicine. short term memory problems, moody, quick to anger and hyper which is such a shame, he's the sweetest boy in the world off the medicine. We are up to 750 mg a day and just switched from ER ( extended release) back to the sprinkles. Has anyone had a similar problem with depakote. I hope we haven't messed him up by switching meds, I just wanted to try Lamictal because it's suppose to be easier on the body and fewer side effects, it just didn't control his seizures and the crying was so hard on him ( not fun for the rest of the family)
Posted 7/3/2007 9:39 AM (GMT 0)
I m no parent but I have had absence siezures all my life at first it sucks but eventually I got used to it now I am on lamictal and not really having any problems with it anymore probably cause I am 21 now.
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