How long does it take for Keppra to make a difference, ugh?

[ccaronn]

Hello, my son began Keppra on March 18th and is on 1000 mg a day. He also takes 500 mg of Dilantin a day and has for almost 2 years. (The neuro added Keppra when 2 tonic clonics broke through almost 2 weeks ago.) He's had partials almost every day for the past 9 days, which is new for him. When will the Keppra stop the partials, please?
I am so confused and my neuro is tired of my calls.
Thanks,
Christine

 

[niceguyVZ]

You do realize that even drugs can't stop epilepsy and can't cure it. And for some people they just don't work. It is said they work for 60 to 70 percent. but not for everybody. That's why others try Deep brain stimulation and stuff.

 

[CQ:)]

Hi Ccaronn,

Welcome to the CWE.
As you may be aware each & every one of us is different with both our seizures & how we react to medication.

For me when I have a medication change whether it be adjusting the levels of the meds or changing meds I usually allow the 1st 2 -3 weeks after I alter the meds for any side effects.

Keppra is nicknamed Keppra rage as it can cause mood swings, I've been on Keppra for 6 years & had very miminal side effects while on it. Other members are on Keppra or been on it & experienced Keppra Rage. I saw your post about B6, I'm not on it but I believe other members who are on Keppra have taken Vitamin B6 & it has helped with the Keppra rage.

I hope your sons seizures reduce once his body adjusts to the Keppra.

 

[ccaronn]

I don't think of it that way, niceguyVZ, to be honest. I just think about keeping my son from suffering. I believe we'll get there. Thanks for your reply.

CQ - thanks for your sweet, hopeful message.

 

[valeriedl]

My neuro says it takes at least a month to find out how a med is going to work for you.

When I was diagnosed with epilepsy it took a few years to figure out what meds work best for me, hopefully it won't be that long for you.

Some meds didn't work and some I couldn't take the side effects from. I take a few different meds and they had to figure out which meds worked well with each other and what dosage of each med I needed to be on. Just because one person has good results while using a certain med may not mean it's going to do the same for you.

As said - medicine cannot stop seizures. The meds that I'm on have reduced the amount of seizures I have and they aren't quiet as bad as they were at first.

I do take keppra and I've got pretty bad keprage from it. I tried taking B6, with out talking to my neuro about it first, but stopped because it was causing me to have seizures. This may not happen with you, it doesn't with a lot of people. This is just sort of one way that you can see that different people react differently to different meds.

I know it must be hard seeing what your son it going through and I hope things get going good soon.

 

[tiggy'smom]

I keep reading so many posts of people that have this rage from the keppra. I myself suffered some crazy sh#$ while on it. On top of it throw in some panic and anxiety attacks. It was like being on one of those merry-go-rounds when we were kids and you were on it and that big-ass bully would keep spinning it no matter how loud you begged him to stopped. Your mind was there but at the same time just spinning out of control with summer parkway bennie roadrage thrown in. I don't understand why it's still on the market.

 

[Matthew74]

I don't know what the maximum safe dose of Dilantin for a child is, but I wonder why your doctor didn't up the Dilantin. Is he having bad side effects?

There are a million reasons he could have had the two seizures. He could be growing, gaining weight, stressed, sick, drank too much caffeine, didn't get enough sleep, got low blood sugar from missing a meal, ate too much ramen with MSG, etc.

For many people, Keppra is a very effective and quick acting drug. My impression is that if he is on his regular dose of Dilantin as well as 1000 mgs of Keppra, and is still having seziures, the Keppra either isn't working, or isn't working well enough. This is just based on my experience (I'm on Keppra) and what I have read on a couple forums.

It could take him some time to "level out". After he had the two big ones it might take some time for him to get back to normal. That MAY be why he is having the partials. They may go away. On the other hand it seems like they are getting worse, not better. If they continue to get worse it is even possible that the Keppra is making them worse.

People all react differently to different meds. I can only say that if your doctor is doing one thing, and the seizures continue to get worse, it might be the wrong thing. Give it some time, but don't be afraid of speaking up if you have to.

 

[ccaronn]

A well-reasoned response, thank you, Matthew74.
When we see the epilepsy specialist in Chic. on April 7th,
we will hopefully get some answers. Thanks again.

 

[N Sperlo]

Just like Matthew74 said people react differently. I'm on 2000mg 2x/day and it alone doesnt do the complete job.
It may just take the right mix. It can take quite some timw and some trial-and-error to get things done.
I know when I was diagnosed and going through the hoops, it was harder for my mother than it was for myself. Hang in there.

 

[ccaronn]

NSperlo,
Your message made me cry. I guess it's bittersweet for me talking to people here. Thank you for your message.
Christine

 

[rx4brdm]

Stay strong ccaronn. Changes in the dosage of my Keppra usually took about 2-4 weeks before a real change was noticed.

Not to discourage but it is quite a bit of trial and error as a child is growing. My suggestion is too keep track of everything that could make the problem worse. Nutrition, sleep habits, TV, video games and daily activities, etc. are all part of the equation. As a child my diet was very limited. We found the Feingold diet to be the best one. Noob here so it won't let me post links I guess. It is generally used for ADHD but getting rid of all those artificial ingredients can have a huge effect on medical issues.

And don't worry about bugging his doctor it's his job.

 

[Matthew74]

Rx4bdm mentioned keeping records. I recently found some fairly detailed records that my mother kept of when I first had seizures, and a few years later when I was diagnosed. It was immensely helpful to me, especially as I have no memory whatsoever of most of it. I think it would also be useful to a doctor.

 

[ccaronn]

Yes, documenting every day, thanks.
He doesn't want to go anywhere or do anything.
Will that pass, please?

 

[tiggy'smom]

The best thing you can do is keep a journal and date and time his seizures and how long they last. And even if you have to make a pain in the ass of yourself with his neurologist so be it, you are his advocate. Meds act differently in everyone because our bodies and our chemical make-ups are all different. I'm 44 and I haven't had the best health and was diagnosed in '05 and had to leave my career as an RN and move back in with my parents. I don't have kids God bless those of you that do and especially those that have to watch those of us that have to go through E. It effects everyone in the family and community of friends. Just know that you have support and "been there" here. Good luck to you both.

 

[ccaronn]

The toughest part so far is how much my active, fun-loving
son has turned into a couch potato.
Best wishes to everyone.

 

[Nanellen]

I started Keppra this past xmas and the exhaustion set in. Oh my, despite my existing back pain, I knew the Keppra was keeping me down. Im still on it, but not for long as I cant stand the side effects. Im not myself, and I know it. Friends have disappeared and you know, I don't really care. So, now dr. is gonna try Vimpat. I'm not excited bout it but im just too depressed. Tegretal worked well for me but I got the awful rash that can go with it. Before that, Dilantin worked for 20 plus years, but time to change that due to its side effects on bones for menopausal woman. Anyway, lets keep learning....

 

[N Sperlo]

The toughest part so far is how much my active, fun-loving
son has turned into a couch potato.
Best wishes to everyone.

My mom keeps a picture of me passed out on a wood panel floor on her office file cabinet. It is next to the picture of her with two broken legs. They are there to remind her that things get hard in life. Makes me laugh when I see it.

 

[valeriedl]

I keep a seizure journal just like the one that people have described. When the seizure was, how long it lasted, what I did during it and if there were any after effects a headache for example.

I type the list of these things. I see my neuro every 3 months but I type the seizures in by month, not just all in a row. He said this is very helpful to him because it can make our visits go easier. I we don't have to sit there and try to remember things.

I started Keppra this past xmas and the exhaustion set in. Oh my, despite my existing back pain, I knew the Keppra was keeping me down. Im still on it, but not for long as I cant stand the side effects. Im not myself, and I know it. Friends have disappeared and you know, I don't really care. So, now dr. is gonna try Vimpat. I'm not excited bout it but im just too depressed. Tegretal worked well for me but I got the awful rash that can go with it. Before that, Dilantin worked for 20 plus years, but time to change that due to its side effects on bones for menopausal woman. Anyway, lets keep learning....

Did your back pain start before or while you were on keppra? I can't remember how long I was on it but I know it was for a good many years.

A few years ago I started having sever back pain. I'd even end up in the ER because I couldn't move. I found out I had 2 herniated discs and had surgery. I'm wondering if the keppra could have had any effect on that or not?