Has anyone chosen not to medicate for seizures? - Mothering Forums

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Old 07-09-2008, 04:26 AM - Thread Starter
 
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I’m really considering it. Am I crazy?
I never wanted to medicate to begin with but wasn’t sure if it was because I was afraid of the drugs or was in denial about the seizures. My daughter’s seizures, according to the extended VEEG, occur frequently. However, they are subtle and she was not developmentally delayed as a result of the seizures. (Her speech regressed for a while but improved w/ST before the anti-seizure meds.) I’m the one who pushed the ped for years believing she was having seizures – now I sort of regret it. I’m glad we know but am still not sure she needs the meds since:

-the seizures are not causing permanent damage – according to the doctors
-the meds are not stopping all the seizures anyway
-we’ve increased her meds several times in the past year trying to keep her valproic acid levels within range; now her carnitine levels are low
-the seizures were not causing developmental delays
-it seems as though the meds have changed her personality…maybe it is the ‘real her’ w/out as many seizures but maybe not. I miss the old Maggie.
-is the benefit of the drug really worth the risk? What are the risks of long-term medication?

The main reason I medicated was…I was told by our original nuero that if we didn’t, the frequency and intensity of the seizures would increase and can cause permanent damage. The second neuro agreed with that statement but our current neuro says that may or may not happen on or off meds. So why medicate?

I will not forgive myself if I stopped medicating and she has a severe damaging or life-threatening seizure. OTOH, I will not forgive myself if taking the drug results in liver or pancreas failure or some other side effect.

I understand everyone’s seizures are different, but…If you’ve decided not to medicate please tell me your experience. If you are medicating and there is something I am overlooking or mis-understanding feel free to set me straight! Thank you!!

It’s very late and I’m very tired so I may re-word this tomorrow.
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Old 07-09-2008, 06:35 AM
 
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My sister has had seizures since she was 5.

Phenobarbital turned her into a zombie, and my parents weaned her off that and stopped all medication for a couple of months. Just to try to help her system, and see if she could de-toxify.

They had a nuerologists' blessing, as she was kind of an experiment to see what would happen, if she did stop medicating.

Her seizures did increase, and although no more nuerological damage was happening, the frequency of them was upsetting to her, and to all of us in the family. She had the Tonic-Clonic type, too, complete with convulsions, foaming at the mouth, all of it.

No nuerologist ever tried to make us believe that medication would stop the seizures, completely. But in the end, she went on Tegratol and has been on it her whole life.

The way I've always understood it is, even if she had seizures daily, one seizure was preferrable to 3 or 4 or 5 of them. The body is exhausted after a T/C seizure so less was better then more. Medication can help stop some of them, even if not all of them are stopped.

She's adjusted her medication through out her life, sometimes needing more of it, sometimes less. FWIW, she has a healthy liver and pancreas, and overall, is in very good health.

I think trying to go med free is a personal decision, and it's up to you to decide what's best for your child. If you have a nuerologist who is willing to work with you and observe her, that's good. If the nuero thinks going med free is an option, I would probably try it. If it doesn't work, you can always go back to medicating.

I hope you can figure something out.
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Old 07-09-2008, 07:47 AM
 
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I don't have an answer for you. I am of the thinking that unmedicated seizures would gradually become more severe and frequent in occurence. I would also imagine the post ictal stage wouldn't be very comfortable if your dd is having them frequently. Risking status is not something I am comfortable with and willing to risk. It is a real thing and nothing to mess around with. And it only needs to happen one time, kwim. I know that sounds like a scare tactic, but it is the reality of this and something I know I try to push out of my mind, because well....it's terrifying. My dd's seizures are moderately controlled by meds. If she was having few seizures, every couple months, and never clusters - I may take more of a wait and see approach. I think it depends so much, because the severity of the illness is not the same in everyone and also because it changes over time, and even can get better for a while, or worse due to certain things...

A few thoughts...(I really have no advice - your dd sounds a lot like mine, from what you've shared before)

She doesn't have to stay on them for life. From what I understand, if the child is seizure free on medication for 2 years, then they can try a trial off meds. If they have a seizure again, they go on meds for another four years.

Epilepsy that is caught and treated early has a greater chance of being grown out of. This is what I have been told.

I also wonder about the meds....my dd is so much nicer and happier now that she is off keppra and on tegretol. She is really a whole new person. Was the keppra not working? Or was the keppra causing her issues? I don't know. It's like the chicken and the egg.

How old is your dd again? I have thought about this too. I think that when dd is old enough to describe the feelings she's having in her body then we will talk about a trial off meds. Due to the nature of her epilepsy, I don't think we'll get there for a while. Medication has given her a new life though...It is very hard, these situations. You know your daughter best and are the one who can ultimately make the best decision for her. I am curious to see what others say. For me though, not medicating my dd's epilepsy would not be right, I don't think.
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Old 07-09-2008, 11:58 AM
 
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In my son's case, medications made his seizures worse, in addition to giving him dystonic attacks. Right now he is not medicated. AND his seizure activity has actually slowed WAY down since stopping the medication.

However, his seizures are thought to be caused by a metabolic disordrer, and therefore, reactive, non-epileptic type seizures.
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Old 07-09-2008, 12:43 PM
 
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i don't think you are crazy.
my daughter has big long tonic-clonic seizures. i waited to start meds for charlotte. i just needed to try some more natural things first and see if that helped. we still do this, diet, supplements, naturopath... and we medicate now, too. seems like the nat. stuff helps the severity greatly and the meds take care of the rest. after being on a few diff medications, we tried weaning her off Keppra with the drs go-ahead. she is back on keppra and we also think she is improving with age/growing out of them slowly? i am sure you and your dr will do what is best for your child.
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Old 07-09-2008, 02:00 PM
 
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I don't think you're crazy, but my son's eegs never showed that much activity. From what I described, there was zero question that they were seizures and their frequency went in spurts. They kind of tried to bully me into the drugs stating that the next seizure could be strong enough to cause serious permanent damage. And my son had serious developmental problems of unknown origin. Also, as an infant he had horrible spontaneous choking that they now believe were seizures.

We couldn't even swallow the concept. And while we waffled, they disappeared. I don't know if it was coincidence, but they disappeared around the time we cut out a food irritant. I didn't even connect the two until I saw a movie about the Johns Hopkins seizure diet and was amazed that they could control seizures with food--a program that is now decades old.

So we didn't do it. I'm not sorry, but I wasn't facing the severity that you are, either... kwim? I honestly have no idea if it would've made a difference.

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Old 07-09-2008, 03:49 PM
 
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Linden's had some and we don't medicate either. Mainly because I think the meds would have more side effects than a seizure every now and then would.
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Old 07-09-2008, 04:01 PM - Thread Starter
 
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Thank you all for your responses. When I came onto the MDC this afternoon I was afraid of the responses I would get. I am going to talk to the neuro about options.

Quote:
Originally Posted by Katana View Post
The way I've always understood it is, even if she had seizures daily, one seizure was preferrable to 3 or 4 or 5 of them. The body is exhausted after a T/C seizure so less was better then more. Medication can help stop some of them, even if not all of them are stopped.
I agree with this. I’m just frustrated because most of Maggie’s seizures are so outwardly subtle I really do not know how much the Depakote is really helping. I’m going to ask the neuro if we can do another EEG while on the Depakote to see what is going on. The unknowns are driving me crazy.


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Originally Posted by 3_opihi View Post
And it only needs to happen one time, kwim. I know that sounds like a scare tactic, but it is the reality of this and something I know I try to push out of my mind, because well....it's terrifying.
I am terrified too, but I have no faith in the drug.


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Originally Posted by 3_opihi View Post
She doesn't have to stay on them for life. From what I understand, if the child is seizure free on medication for 2 years, then they can try a trial off meds. If they have a seizure again, they go on meds for another four years. Epilepsy that is caught and treated early has a greater chance of being grown out of. This is what I have been told.
I was told this too and this was/is my hope. We were actually told by the original neuro that the drugs can 'retrain' the brain and eliminate seizures. Our recent two neuros disagree w/that statement.


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Originally Posted by 3_opihi View Post
I also wonder about the meds....my dd is so much nicer and happier now that she is off keppra and on tegretol. She is really a whole new person. Was the keppra not working? Or was the keppra causing her issues? I don't know. It's like the chicken and the egg.
That is a whole other issue for us. Is her behavior a result of the seizures, the meds, or Aspergers? She hasn't been officially diagnosed with Aspergers and we had decided not to pursue the diagnosis fearing the label and figuring she is how she is - but, it w/b nice to know the source of the behaviors. I was thinking of contacting the behavioral psychologist she saw a year ago for a consultation.


Quote:
Originally Posted by 3_opihi View Post
How old is your dd again? I have thought about this too. I think that when dd is old enough to describe the feelings she's having in her body then we will talk about a trial off meds.
She just turned four and not able to describe what is happening - or at least not reliably.


Mamaverdi, My daughter’s are epileptic type but I still wonder what effect the drugs are having on the seizures and if there is anything else that we could do to lessen the frequency.


Quote:
Originally Posted by maxymum View Post
i waited to start meds for charlotte. i just needed to try some more natural things first and see if that helped. we still do this, diet, supplements, naturopath... and we medicate now, too. seems like the nat. stuff helps the severity greatly and the meds take care of the rest.
I wanted to wait and try alternative methods first but the neuros scared/pressured us into the meds. They weren’t happy I demanded an MRI prior to agreeing to medication. I’m going to look into more natural remedies – it can’t hurt even if we continue the meds. Any sources for natural remedies w/b appreciated.


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Originally Posted by heatherdeg View Post
They kind of tried to bully me into the drugs stating that the next seizure could be strong enough to cause serious permanent damage.
We were told the same thing. But now we're told she could have a serious seizure anyway. At what age did you son's seizures stop?


MotherWhimsey, If her seizures reduce in frequency I would do the same as you in a heartbeat.

Thank you again!
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Old 07-09-2008, 04:15 PM
 
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When my son had his second third, and then more constant seizures, I did medicate him. Immediately. He was losing skills, etc. But w/new information about him it makes it easier to know what to do.

Are you working with a pediatric epileptologist? Honestly, not just an "interest" in seizures, but an actual board-certified epileptologist. Some neurologists have NO business doing seizure management.

Our adult epileptologist said that 75% of people are treated well with the first med an epileptologist picks. The rest usually respond to the second. Too many side effects is NOT considered good response. It may be good seizure response, but a good doctor will look at the WHOLE child picture.

It's completely true that "the next one" can cause permanent damage.

I think you have to weigh whether in your child's case, what the right thing to do is. BUT, you can't do that UNLESS you are working with a bona fide epileptologist.

And, just cuz you get an ped epi doesn't mean they are going to be a good doctor.

There are just so many factors.

And FWIW Depakote has soooo many side effects including carnitine (and other) deficiencies. There ARE other medications. It stinks to be in that 25% though. Boy do I know about that.


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Old 07-09-2008, 04:36 PM - Thread Starter
 
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Thank you again mamverdi.

Our first neuro at Univ of Chicago was an epileptologist and he chose the Depakote. He was originally my son’s nuero so we used him for Maggie too but when my son’s genetic tests were positive for CMT4f/Dejerine Sotta he said he was not comfortable treating him and sent us to one of his colleagues. He actually said ‘switch your daughter’s doctor too since anyone can handle seizures’. We didn’t care for the second doctor at UOC and switched to a neuro at Mayo Clinic. I’ve assumed she was an epileptologist because they paired her with us. I just checked out her credentials and she is actually a ped neurologist who specializes in metabolic disorders not an epilepsy specialist. Ugh!!! Having two children w/different neurological issues I guess the hospital assumes, possibly incorrectly, they should see the same doctor.
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Old 07-09-2008, 05:14 PM
 
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Quote:
Originally Posted by dbsam View Post
Thank you all for your responses. When I came onto the MDC this afternoon I was afraid of the responses I would get. I am going to talk to the neuro about options.

I agree with this. I’m just frustrated because most of Maggie’s seizures are so outwardly subtle I really do not know how much the Depakote is really helping. I’m going to ask the neuro if we can do another EEG while on the Depakote to see what is going on. The unknowns are driving me crazy.


I am terrified too, but I have no faith in the drug.
Personally if my child had seizures - I think I would medicate. But I don't have a child with seizures so I don't know what I would do for sure. But I do know that depakote has been linked with or implicated in the development of PCOS which I know is a concern for you and thus must be for your daughter - I would absolutely look into a different medication for her, if you choose to medicate. And if you choose to go med free, best of luck to you!

DS T 11/16/03 DDs K & E 3/28/08
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Old 07-09-2008, 05:29 PM
 
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Is depakote the only med your dd is taking? I would probably not feel comfortable staying on this medication either....I actually took it for a brief period in high school and could not tolerate it. Is there any way you could try another med?

I think that is an important thought, actually. Around December of last year, I was really questioning if having dd on these meds was worth it. We were having such a hard time with the side effects, her seizures weren't well controlled....Really, all we needed was another med. Unfortunately, we waited until May to get there - but now that we have switched she is doing so much better. We've had to try a few different things before we found something that worked and was tolerable.

Just don't give up. Also, my chiropracter was telling me that he treated a little boy with epilepsy and it actually did help a bit. It makes sense, since chiro is supposed to help calm the nervous system. I think, for us, we will always use alternative medicine as an adjunctive treatment. It doesn't have to be either/or.
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Old 07-09-2008, 05:53 PM
 
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Originally Posted by dbsam View Post
Having two children w/different neurological issues I guess the hospital assumes, possibly incorrectly, they should see the same doctor.

HUGS!!!!

I soooo know this feeling.

I think we counted an we have seen upwards of 8 neurologists. MOST of them have different areas of expertise. It was our epileptologist who said that we need other neuros.

We've got him, the one for sleep, three regular old ones (but we need a different one on that front), two for neurometabolics, one for developmental (though again we need another).

We love neurologists over here. :

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Old 07-09-2008, 05:55 PM
 
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I think, for us, we will always use alternative medicine as an adjunctive treatment. It doesn't have to be either/or.
This is what we do now as well. And a very good point.

So little is black and white. And so little NEEDs to be either/or.

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Old 07-09-2008, 06:24 PM - Thread Starter
 
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Just don't give up. Also, my chiropracter was telling me that he treated a little boy with epilepsy and it actually did help a bit. It makes sense, since chiro is supposed to help calm the nervous system. I think, for us, we will always use alternative medicine as an adjunctive treatment. It doesn't have to be either/or.
I'm a huge fan of acupuncture for my migraines, infertility, etc. but have never seen a chiropractor. (I have not had acupuncture since I had the kids - no sitters .) I actually called a chiro a few minutes ago and set up consultation appts. for me, my son and daughter. There were only two remotely near us that were certified to practice on children so I chose one of them.

yes, Depakote is the only anti-seizure med she's taken.

Thanks for the hope - I'm so glad you've found a med that works.
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Old 07-09-2008, 09:25 PM
 
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MotherWhimsey, If her seizures reduce in frequency I would do the same as you in a heartbeat.
yeh, our situation is totally different cause he does NOT have epilepsy, does not have tonic clonics, and has only had a few. So it's totally different and our neuro didn't want to treat anyway unless it became a more consistent thing, or the affected him more. I hope someday that her seizures do slow down and you guys can try coming off the meds. s
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Old 07-10-2008, 12:23 PM
 
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Hi, I don't have much to add but I just wanted to throw in there that when my son was on Keppra, we were able to majorly improve the behavioral side-effects by supplementing with a high-quality B6, which is one of the things that Keppra lowers in the blood.

It helped me feel like I wasn't crazy that the meds were affecting him. None of the doctors believed me; they just said that all 4 year olds are like that.

I started supplementing anyway, on the advice of other parents, and saw his behavior immediately improve and his nightmares go away. When I told the doctors, they then told me that Keppra's manufacturer actually recommends to doctors that they prescribe B6 with Keppra!:

There's a link out there that lists all the nutrients that are lowered by anti-seizure meds; I can post back with it later if you're interested.

The brand we used was Country Life Active B6 caps, because it's in the form that is most absorbable by the body. We used about 75 mg a day. When we used 50, we didn't see a big difference. When we used 75, he just melted back into his normal self.

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Old 07-10-2008, 03:18 PM - Thread Starter
 
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There's a link out there that lists all the nutrients that are lowered by anti-seizure meds; I can post back with it later if you're interested.
yes, please post the link - thank you!

Even before the meds Maggie's behavior was 'quirky' and she tended to have severe meltdowns. Her behavior has changed - not necessarily better or worse. She often seems melancholy and a little ‘out of it’. I'm not sure if the change is the Depakote or if it is the normal changes as she gets older or maybe even the seizures. (Her sensory issues definitely improved within a week or two on Depakote. But the doctors said there couldn’t be a link.)
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Old 07-10-2008, 04:33 PM
 
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We were told the same thing. But now we're told she could have a serious seizure anyway. At what age did you son's seizures stop?
I want to say he was just turning 2yo or soon after he turned 2yo. Dh thinks he may have been 3yo, but I don't think he

After the age of about 15 months, we no longer saw the "choking" seizures. He never had his eyes roll back or his body thrash. He's have a choking episode. Sometimes out of a dead sleep and then right back into a sleep. After those dissipated, it was "absence" seizures for the most.

He only had one very serious seizure that looked like what people identify with as a "real" seizure. That was at 13 months old. It scared the LIFE out of me. And they used it to point out how serious they CAN be. They know how to manipulate/scare people that's for sure!

I should also note that his EEGs were always clean. Even the 24 hour one. (I'm pretty sure it was only 24 and not 48--I'll check that, too). So we felt pretty justified in letting it go.

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