Introduction...

[Mainer]

Hi ~ I'm here for my 15yo daughter, and she may post here, too. Reading the post by zazazu below, I found it to be so similar to what my daughter has gone through.

Absence seizures only ( since she was 8 ). No med has eliminated them, though a couple have lessened them a bit. All the meds have had side effects that were worse than the seizures... except Zarontin, which did NOTHING for the seizures, but had no side effects.

This past week, we took her off Keppra after a month because she became so severely depressed - worse than ever before. Very scary. Chiropractic adjustments seemed to work for a while, but then the seizures came back in full force after 8 months.

Now we are looking into other natural methods. She's tired of the whole thing and very discouraged. Is there any kind of a teen forum here? I supposed I should look around before asking, but I'm just jumping in.

Anyway, I appreciate this forum and I look forward to learning new things here.

~ Paulla

 

[RobinN]

Hi Paulla-
My daughter is 16 and has been dealing with tonic clonic seizures for almost two years.
We are off all meds for the time being. We are in the first phase of neurofeedback, with some positive results so far. It is nice to know what side effects if any are directly due to her brain function and not changed by the medicine. She is alert, in a happier place than she has been in a long time. I highly recommend it.

There is an area of CWE called the LOFT that is for teens. Members can post in there but it is not open to the "lurkers". I hope she is willing to check it out. We have some wonderful teens and young adults around the forum. My daughter hasn't been interested yet in taking much part in the forum. Perhaps she will as the neurofeedback begins to show positive results. She can offer her view on it.

I am glad that you joined us.

 

[Bernard]

Hi Paula, welcome to the forum. :hello:

Vitamin B6 supplementation is said to help curb the moody side effects of Keppra.

I highly recommend EEG neurofeedback for absence seizures. My wife used to have multiple, daily absence seizures, but she hasn't had one in over a decade now since she finished 5-6 months of EEG neurofeedback sessions.

Robin already mentioned The Loft. It is a forum for CWE members only created with teens in mind.

 

[xenome]

Hi Paula, and welcome.

Ive had absence seizures since I was 12, teenage years with epilepsy is tough. I know what your daughter is going through and Ill help whenever I can.
Im 27 now, when I became an adult it became easier, even though now I have tonic clonic seizures too.
I had a loving mother just like you who helped me get through those bad teenage times.

Its good to have you here.

 

[skillefer]

Hi Paulla! Welcome to CWE! I think your daughter will like the Loft, as already mentioned by Robinn. Several people here have some good info, or can guide you to good info on alternative treatments, such as Neurobiofeedback and vitamin supplementation. Just remember...she's still a kid. And like all kids, she just wants to be like her friends. Feel free to ask any questions, or rant if you need to. It can be stressful being a parent and watching your child go through this. The thing is...neither you nor your daughter are alone. So welcome to the forum.

 

[brain]

:hello: Paula!

Welcome to CWE! And the postings about taking
B-6 with Keppra are correct; as its been deemed
helpful and personally However, sorry that your
daughter is experiencing those hideous seizures!

We have a group here that are members and that
posts here and one is even a Mod over the Loft.



So she can register and yap away with the gang
and not feel left in the closest and come on Out
of the Shadows ...

 

[BuckeyeFan]

Hi There

The teenage years can be tough enough when healthy. The challenge of E just makes it that much tougher. My E did not strike until I aws 20, so I did not have to deal with it through school.

Check out the postings by some of our other teen members or their parents and you might see a trend. I myself am seeing kids who are growing up strong and facing these challenges very well. That is not to say that they don't get upset, heck I do that all the time. I just think that this is making them better people in a lot of ways because they are realizing what is important in life. I have a lot of respect for them.

You may also want to check out some of the female issues. I am just an ignorant guy, but some our ladies here have a great understanding of the additional challenges they have with E.

Welcome to CWE, stick around for awhile and I will get the coffee.

:cheers:

 

[Mainer]

Wow ~ thank you to everyone. It is so comforting to hear all this and to know we aren't alone. I appreciate all the understanding comments.

The one thing we've found is that no medication has helped the seizures. Not one. A few have brought them down from about 30/day to maybe 10/day, which is not bad, but with all the awful side effects, we figured, what's 30 compared to 10? Not a big jump.

The big issue now is that she's 15 and it's time to take driver's ed. She is extremely upset that she can't drive (I don't blame her) and she wants to keep trying medication. The only one we haven't tried is depakote, but I am not inclined to try that one. EVEN if it helps, I'd be shocked if it took away the seizures all together, as nothing else had. With all the side effects and potential problems - why even go there? So we're in discussions about that.

I am vaguely familiar with biofeedback, but I've not heard of neurofeedback. I'm going to look into that today - thank you for the ideas.

One other thing (can't remember if I shared this). I took her to a chiropractor a year ago and when he started adjusting her, the seizures went away completely. Not one seizure. Then, 9 months later, this past November, they slowly came back. It was very discouraging for us all, as we thought they were gone for good. Not long after that, she was started on Keppra, and you know the rest of the story.

Now, she's on nothing again, having just as many seizures as on Keppra, but feeling SO much better.

Ok, enough said today. I'm off to look into those other ideas.

Thank you all!

 

[Bernard]

... I took her to a chiropractor a year ago and when he started adjusting her, the seizures went away completely. Not one seizure. Then, 9 months later, this past November, they slowly came back. ...

Have you tried taking her back to the chiropractor?

 

[Georgiagirl88]

Hi Paula,

I just wanted to welcome you and send my encouragement and prayers your way. Tell your daughter not to give up. Things will get better for her!! I can only imagine how hard it must be for a young person, because I am an adult and it is very hard. But you just have to keep your head up and believe it will improve! I will be thinking of her and praying she feels better! ALot of folks here have been really helpful and encouraging (most of all), so I think you'll find it helpful as well. Best wishes!

Michelle

 

[skillefer]

Oh! I remember the frustration of that....I got my learner's permit...then the day before I was supposed to go take my test, I had a seizure....waited a year, got a learner's permit again, and again had a seizure the day before the test. I didn't get my driver's license till ...Oh wow! I was in my 20's. The thing is, driving is not the end all be all thing that teens think it is... And I managed to have friends that really did understand, and were willing to drive me around if I needed. But yeah, I can understand the frustration. As for the medication....well, she is getting to the point where she should feel that she does have a say in her medical treatment. Have you presented her with a list of options and asked her what she thought? Personally, the only major issue I had with depakote was weight gain. Let's just say that 190 lbs on a 5'3" frame can be depressing. I was taken off the depakote (outgrew the petite mals) and the weight came off....but it took time. That, and she has to understand....none of these treatments...including meds is an automatic, instant fix. Of course, try explaining that to a teen....half the time, mine gets angray because the headache medicine doesn't work fast enough for her....*sigh*....Anyway, I'd suggest that you teach her to advocate for herself...ask questions of the doctor, etc. After all, she'll have to do it someday. Start by actually listening to her input....you never know, you might be surprised.

 

[BuckeyeFan]

chiropractor

Don't dismiss the chiropractic path. I have no experience with it helping E, but I personally knew a teenager who's heart rate kept dropping drasitcally and he would pass out. They thought this kid was going to die and had him to all kinds of specialists. Turned out a local chiropractor found he had a pinched nerve that was causing all the problems. Fixed that and he never had a problem again.

My opinion only - but keep this as one of the paths you explore.

GOOD LUCK.

 

[Mainer]

I agree about chiropractors. My dd has continued going, and the seizures came back while she was still in chiropractic care. Very odd.

Thanks for all the suggestions. I especially agree with the fact that it's time for her to have a bigger say in this. I just read an article on enabling and I think I'm struggling with that.

Thanks!

 

[RobinN]

It is a difficult balance. We also face this. Last week Rebecca became really angry and her therapist was able to get to the middle of it and find out that it was due to Rebecca feeling her life is not in her control. Giving some of that control back to these young people is really important. Rebecca's therapist is going to work with her to figure out what is reasonable and what isn't. I will be kept in the loop and shown the plan, which helps me to know when to push and when not to, yet takes me out of the Control Room. I like that.

I don't know what I would have done without Dr. Becker's help. She has been a godsend when life became too difficult to bear. The times when traditional doctors were not making any sense, and I thought I might just be going crazy. She was always a phone call away. I highly recommend finding someone you trust, other than a parent or family member that the child / teen can confide in.