My 17 year old dtr has epilepsy

[S-J Walsh]

My dtr is 17 diagnosed when she was 11 years old when her periods started...She's been on so many drugs. omg. Poor child. She has grand mals. she is currently on lamactil and now the new add-on drug topimax. Just a short history...She was on Clobazam...not good. worked for awhile. No. Then Trileptal..omg that was awful and then Keppra when she went physco. OMG that was a very bad bad time. Now she is on the new drugs and we're hopeful. Any thoughts would be great or input. s-j

 

[Bee91]

My dtr is 17 diagnosed when she was 11 years old when her periods started...She's been on so many drugs. omg. Poor child. She has grand mals. she is currently on lamactil and now the new add-on drug topimax. Just a short history...She was on Clobazam...not good. worked for awhile. No. Then Trileptal..omg that was awful and then Keppra when she went physco. OMG that was a very bad bad time. Now she is on the new drugs and we're hopeful. Any thoughts would be great or input. s-j

Hi,I'm Brandi. I'm 16. Sorry to hear about your daughter. Seizures suck.
I've had seizures only for about a year and a half now.
I have Complex partial, Tonic Clonic, Simple Partial, Tonic, and now some Atonic seizures.
I'm on Topamax and Klonopin.
How's your daughter doing now?

 

[RobinN]

Hi S-J, Welcome to CWE
I am really glad that you joined us. My daughter is 16 and like Brandi has been having seizures for the past 1.5 yrs. For us it also centered around the beginning of her periods.
We tried four drugs, and the side effects were not acceptable to us. Rebecca also has grand mals (now called Tonic Clonic) and so getting them under control has been my mission for the past year and a half.

We are using a combination of nutritional changes, supplements and added bio-identical hormones. We have just increased her magnesium levels per the doctors orders and so far so good. It is a bad time, no two ways about that. Seeing your precious baby drugged up is awful, and witnessing a seizure in someone that has so much life is heart wrenching. I am with you there.

However, this forum has some wonderful suggestions about alternative therapies that you might not have been told about before. So you will need to get comfortable and start reading, because knowledge is power. You will find a way, don't give up hope, to bring your daughter back to a state of health.

This is a good place to begin:
http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

I am glad that you joined us.

 

[Birdbomb]

Welcome s-j

Make yourself at home and check out the library. Plenty of info in there and maybe something that can be of help to your daughter.

 

[brain]

:hello: SJ

Sorry to hear about your daughter!
Epilepsy stinks!

I had the same reaction with Tegretol,
Trileptal, and Keppra ... We ought to
form a Club!
But at least Zonegran and Clonazepam
(which is Clobazam to you) works for me.
Do scroll around CWE and don't give up!
I do hope they will find something for her
but the frustrating part is, it all takes time.

onder:

I just wonder if the Neuro / Epi is pushing
the drugs too quickly on your daughter?
Some people just cannot take the AEDs
so quickly, I am one of those.

Maybe having a talk with your daughter's
Doctor about going slow and easy the next
time around in progression (while yes she
would have seizures during the titration which
would be unfortunate but it would go away as
the medication builds up)?

Just my humble opinion here.

 

[epileric]

Hey S-J. Good to see another Canadian here. I loved it when I was in Calgary. I'm just next door in B.C. now.

The people at this site are great, lots of support & advice here. There's also a lot of info about various treatments other than drugs like diets, supplements & neurofeedback that I'm very interested in. Hope it helps you & your daughter as well.

I've had epilepsy all my life & have also gone through tons of different medications. Recently we've tried to see what might get better control of my seizures & I've gone through a lot of the meds you've mentioned but Keppra was the worst for me. I got extremely spaced out & forgetfull but the depression & anger were just awful. I can't help but wonder of others considered me a psycho for the time I was on it.

 

[RobinN]

I can't help but wonder of others considered me a psycho for the time I was on it.

Eric, this is certainly a possibility, but you can't do anything to change the past. You can be a better person today, just knowing that this is a factor with certain meds.

A saying that I love is: "As a child everyone expects you to spill your milk. It is how you clean it up that matters." I think that holds true to adults too.

 

[epileric]

A saying that I love is: "As a child everyone expects you to spill your milk. It is how you clean it up that matters." I think that holds true to adults too.

Never heard that saying but I like it. Actually I think it holds more truth for adults than it does children.

 

[S-J Walsh]

Thank you so much. I'll pass this info on to my dtr. I really appreciate this and so will she. s-j

 

[S-J Walsh]

Hey Brain, thanks for your reply. I appreciate it. My dtr has been on the increase slowly procedure every time she starts a new drug. Always. But always there is a problem . I am ever hopeful that this time with the Lamactil and the Topimax (not sure if that's spelled right ha ha) that this will work. She is gradually working up to the full dosage of Topimax which will be the week of Feb 19th, 2008. I'll keep you posted on how she's doing. s-j

 

[S-J Walsh]

My sister lives in Victoria with her hubby. He's the Manager of the Costco there. omg. Small world. ha ha s-j

 

[RobinN]

s-j
here there is the move to try to keep it to one drug (monotherapy I think it is called). Is that their typical belief in Canada too?

 

[S-J Walsh]

The keppra was the worst for my dtr. OMG. She was absolutely pyschotic. It was awful. We were scared of her. No one warned us of those types of side effects. Until I researched on line I had no clue that it could happen. Wow. Don't feel bad cause we know first hand how that drug affects ppl. It took almost a year before we realized what it was doing to her. Sure it controlled her seizures, but they kept increasing the dose until she was absolutely out of control to the point of taking a pair of scissors and stabbing two pairs of brand new sandals. OMG. It was awful. That's when I phoned her neurologist in a panic mode. She will never ever take that drug again. So I know how you feel. Really I do. Been there. s-j

 

[epileric]

The keppra was the worst for my dtr. OMG. She was absolutely pyschotic. It was awful. We were scared of her. No one warned us of those types of side effects. Until I researched on line I had no clue that it could happen. Wow. Don't feel bad cause we know first hand how that drug affects ppl. It took almost a year before we realized what it was doing to her. Sure it controlled her seizures, but they kept increasing the dose until she was absolutely out of control to the point of taking a pair of scissors and stabbing two pairs of brand new sandals. OMG. It was awful. That's when I phoned her neurologist in a panic mode. She will never ever take that drug again. So I know how you feel. Really I do. Been there. s-j

Nice to know I'm not alone but sorry you had to go through the Keppra calamity as well. I'm actually lucky in that I was only in it for 5 or 6 months but still.... wow!

My sister lives in Victoria with her hubby. He's the Manager of the Costco there. omg. Small world. ha ha s-j

It is a small world. I've been saying I'm going to join Costco but haven't yet. Thanks for the reminder.

 

[epileric]

Don't know what the overall move is up here but....

s-j
here there is the move to try to keep it to one drug (monotherapy I think it is called). Is that their typical belief in Canada too?

About 20 years ago I was on 3 different AED's & not really having problems with my seizures but the neuro insisted on taking me off of 2 of them & doubling the dose of the 3rd one. When I asked him why he would only say that it was "fashionable".

My present neuro gives me the impression that he tries to minimize the number of drugs he puts me on but if more than one will work better he'll do it (he actually just put me on a 2nd AED). He also seems to focus on how well I'm functioning rather than how few seizures I'm having & I like that:tup:

 

[epileric]

Woops

Maybe I'll get the hang of these little icons eventually

 

[RobinN]

cute
I think you made a very good point though....

it was "fashionable"

and I like how your current doctor approaches it....

how well I'm functioning rather than how few seizures I'm having

It is safe to make mistakes here Eric. Believe me we have all done it. Practice away... you can always hit the edit button and reverse it.

 

[SeizeTheDay]

The worst thing you can do is hover and make it seem like a big deal. Dwelling on it is not going to help anyone, especially your daughter. The best thing you can do for her is be strong because she's got a lot on her shoulders as it is.

Sure it's hard but it's the best thing for everyone. I do think that sometimes it's easier to have the seizures than to be the loved one watching and feeling helpless.

For me, stress is a trigger. If everyone around me was walking on eggshells I know for a fact that it would only add to my stress because I'm "helpless" to stop these things from happening. For a while I was actually getting mad when I'd come out of it and started snapping at my family because they had "that look" on their faces... "What? Stop looking at me like that!!!!!" This isn't typical behavior for me at all. I'm laid back and slow to anger. Afterwards, I'd feel like utter crap for treating them like that because I know it's only because they love me that they feel that way.

Now once my head clears I crack a joke or two and dose up before taking a nap. When I wake up (post-ictal is a b*tch for me) I try and keep it light. "Hey, who wants to go for a ride? I'll drive!" (obviously i'm not but see, that's the joke!!)

Normalcy- that's all we want. Besides, if you spend all your time worrying you are missing out on all the good times you *could* be having with your daughter. By hovering and mother-henning you are only reinforcing the fact that we ARE different. That's the worst thing you could do. And yes, I'm a parent so I'm not shooting my mouth off without knowing what it's like. I know a piece of me would die every time if I had to watch either of my sons go through this.

Don't mean to make anyone feel guilty but this is what it feels like on the other side. Chances are the last thing we want to discuss is our "problem." Sure, sometimes we want to but follow your daughter's lead on this. Don't push or you're just going to drive a wedge between the two of you...

:soap:

 

[RobinN]

Very very good advice. I am learning too. Thank you for taking the time to share that.

 

[epileric]

The worst thing you can do is hover and make it seem like a big deal.
:soap:

:agree:
I"m an adult with a parent who turns me into a helpless child if she sees that I've had a large sz. It's the worst time to have to deal with that sort of stuff