New - Absence Seizures and Monotherapy?
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UPDATED: Sat, 03/08/2008 - 8:07am
shu
Controlling absence seizures
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Does anyone else have a child with just absence seizures and no other neurological problems. I am trying to find someone who can support/relate to what we are going thru. I know compared to others, having just absence seizures, seems less problematic, but I can't seem to find anyone in my situation. My 5 year old has been diagnosed with classic absence seizures just two months ago. We are on Zarontin and continue to increase his dose. It is not making them disappear - I am still seeing several per day. SOme days more than others. The Dr. still seems to think they will disappear I was just hoping to get some positive encouragement for our situation. I am so unhappy when I see him continue to have them. He is somewhat tired from the medicine but we can still handle it. I really don't want him to go on Depokate because the side effects seems even worse. Please respond if you have a similar situation. It is so sad to see him go thru this.
By shu at Sat, 03/08/2008 - 8:07am | 221 views | 22 comments
Topic: Parent Group
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Recent Comments on this Discussion
My son was diagnosed with absence seizures in January 2007. (We have no history we're aware of in either side of the family). He started out with Euthosuximide (sp?) and when he had two petit mal seizures with that, switched to Valproic Acid. After fiddling with his medicine and even having him on both of those at once (which he promptly would fall asleep in school, in the car, etc. taking both), we finally said enough and my husband and I made a decision to take him OFF the Ethos. and have the teaspoon/2x day of the Valproic Acid. My son was less zombie like and does not seem as tired.
However, now he's being diagnosed with ADHD, they said he's 99.9% on that spectrum (so it's the "severe ADHD"). He's had problems this year in first grade he did not have in Kindergarten, including handwriting, writing, and sometimes reading. The school psychologist says those are because of his attention span. (Orally, he can tell you most things, but he has trouble writing them down, which has not helped with written responses at school!).
I requested and got a 24 hour EEG done in March 2008, before they started testing him at school for "child study", which came back negative for seizures, being controlled by that teaspoon/2x day Valproic Acid. I was happy that I insisted on that, because already the neurologist was talking about changing his meds (don't know why) and these results showed that what he had was fine!
I agree with someone else who said that it takes time to see these disappear, but I think at least six months to a year down the road, request the 24 hour EEG (our insurance actually covered it!) and see if the medicine helps. I hated seeing my son so "zombie like" and it's nice his personality and sense of humor are back once we decreased the medicine. Even though our neurologist is at a University affiliated hospital, sometimes I think they are groping for explanations, just like us!
Hope this helps!
Hi shu,
We have finally reached a point where my 5 year old daughter is not having any more absence seizures.
She was diagnosed in 2006 and was having almost 100 a day. Absence seizures are the only ones she has. She first started on the Zarontin(Ethosuximide). Once she reached her max in that med with no results, it was combined with Depakene(Valproic Acid). Only minimal results were seen with that combination. She was then weaned off the ethosuximide and onto Lamictal in combination with the valproic acid. Even once this last dosage was made, it took 2 months for the results to show. I had made an appointment with her doctor to discuss what the next steps to take were, when before the date came to go to the appointment we noticed the 'lack' of seizures.
The stop in seizures only happened a couple months ago, so a total of 2 years to figure out. It really does take patience.
As for side effects, she continues to be tired. This is hard because she is in school full days and sometimes still requires a nap. Other than that no real side effects.
You can email me if you wanna chat more about anything.
Dor. (mom of 5yr old with absence seizures)
d00r@hotmail.com
In response to the mom of 5 yr old with absence seizures on the combo of lamictal and depakote, is she still doing well on the combo? My son is 14, he's been having absence seizures since 4 years old, his have never been controlled. So the doctor and I discussed lamictal and depakote but then I filled the Rx, and I haven't gave it to him yet, because of the risk of the fatal rash. He is currently on depakote a high dose,500mg twice a day and keppra. So far Depakote is the only one that helps him the most.
Hi Dor. I tried emailing you with of course thousands of questions but my email keeps kicking back to me. Please email me at gutepc@comcast.net. I wanted to ask you a couple questions. Thanks, I would really appreciate it.
(mom of 5 year old with absence seizures)
My 7yo daughter was diagnosed with absence seizures 3 weeks ago. She has been on Zarontin for 9 days now. She started on 2.5ml 2X per day for a week and we upped it to 5ml 2X per day two days ago. So far the side effects have been that it's made her eczema much worse and it's made her pretty sleepy. But, we are still seeing seizures. Can anyone tell me how long before we can expect to see an improvement? If the medicine was going to work at this dose, would we have seen an immediate improvement?
Also, for those of you who give the Omega3 Fish Oils - have you been able to find smaller capsuls? All of the Fish Oil capsuls I've come across are so big, and she can't get them down.
Thanks.
Hi there! My son was on Zarontin and we increased every 7-10 days 1 ml as we continued to see seizures. We got to about 6 ml am and pm and the side effects began, belly ache, tired, headache and really we had not had much success at all. Our Dr. chose to switch to Depakote which is where we are at now. I think most people will say you have to be on it about two months at the therapeutic level to see if it is going to work or not. It is the being patient part that is killing me. I want it fixed now and that is just not how epilepsy works. Just keep in close contact with your Dr. I called weekly and spoke to the nurse practitioner at least to tell her what I was seeing at home.
As for the fish oil, I feel safe giving my child a children's version of fish oil which you can get in liquid concentrate at Wegman's or Whole Foods. Not sure if it is helping or not, but I don't think it can hurt. Good luck.
Feel free to email me if you want to chat. gutepc@comcast.net
I can tell you from 8 years experience it can take months for these meds to actually start working towards decreasing seizures. Give it as much time as you can take and still feel safe. Don't switch too quickly or jump to claim a failed med. There isn't much options out there for absence seizures. They are the hardest to treat. We have recently had VNS implant surgery and still Aaron has about 10-12 absence a day. Which is a great improvement from 100 a day he was having.
Hang in there and feel free to contact me if you'd like more info.
www.aaronsbattle.com
I got absence seizures when I was ten. I thought I had outgrown them and left the meds behind for four years until they returned when I was 19.
I'm using Lamictal now, and since there is abnormal activity going on in my brain, I'll probably be on it the rest of my life.
Depakote worked after trying several other meds including Tegretol which increased the absence seizures several times over. At 19, I got put on it again, but switched to Lamictal because of the side effects.
The side effects were mostly just sleepiness 24/7. I had to take a nap every day. When I got off of the meds at 15, it felt like I was waking up for the first time in four years!
Lamictal works very well for me with minimal side effects.
I don't know what your son's seizures are like but for me, sometimes I remember them and sometimes I don't. The ones I remember, I can see and hear and feel everything that's going on. I just cannot respond to anything of my own accord. I say things that don't make any sense in the context of the conversation I was having before the seizure. I have no control over what I do and usually people don't notice that I'm having a seizure. They happen many times a day. But I know I'm having a seizure.
Before I had my grand mal one day, I had about 20 seizures in a row -- one would start and when it ended I only had a couple of seconds to realize that I just had a seizure before the next one started.
I was on this drug from the age of 8 (now 48) and was taken off it two years ago ,its a very old drug and quite frankly I found it next to useless! why they kept me on it god knows.
Just been put on kepra which has realy sorted me out fit wise but downside is depression and weight increase
Kristen Marie
I wanted to respond because I have had absence seizures since I was a child. All of my doctors assured my mother that I would outgrow epilepsy and about 14 years later I still suffer from epilepsy. I started off on zarantin as a child but eventually my body built a tolerance to the drug. I moved on to Depokate and gained alot of weight. Although it was a helpful drug both myself and my family opted not to take it. Continue to support your son and make sure he gets alot or enough sleep as they are often brought on by lack of. If you have any questions about my experiences, advice or anything I saw my family go thru you can email me kristen_masciotti@yahoo.com. Good Luck!
I hope this web site and efa.org can help you. I find they are useful sites. My daughter now 15/ 3/4 has had only absence seizures since 4/ y/o. She has not outgrown them and is down to 5-7 seizures per day.
Please take this serious as to "thinking its less problamatic". I have had grand mals since age 14 and I have far less problems than she does. She is not seizure free ,I am. I can drive, she cant (YET). She gets assistance at school, because reading was harder at the 4-5 year old stage because of seizures effecting learning. She has less meds to control absence seizures, more meds to try and control grand mals.
As I look back, my daughter tried all 4 pills for absence. She's been to 3 neurologist and 1 pediatric eptologist. Yes it made her tired, but it stopped the seizures, but never for permanent. WE are now trying Depakote Sprinkles with Zarontin, B complex vitamins. Her seizures are down from 1-2 seconds, as many as 10-50/day to lasting 1/2 second 5-7 per week. W/o EEG its hard to tell if person is having seizures.
How do you know for certain when there are seizures, even w/o the eye blinks? Are you certain that you child is hearing all the teacher has taught for the day? Have you looked at the odds of outgrowing the seizures if your child is not on meds as compared to being on meds? Lots of questions and thoughts for you some day, just a few listed here.
My daughter is 4. I can identify with your situation. We started noticing the absense seizures a few times per day. We looked it up online and read that shell out grow it.
However, she got a virus, spiking a fever and started having multiple absence seizures and zoning out which scared the heck out of us, sending us to the ER.
We are going to see a nourolgist this week.
I understand what your going through. It is scary to see your little child experiencing this.
However, i plan on NOT using any form of meds. I have read most side effects.. which are worse than the actual absence seizures! i am lookng for other forms of treatment such as diet, to help my little one. Hopeing shell out grow them.
KELLY
kgitaitis@yahoo.com
Hi
just joined this forum today. My 8 year old daughter was diagnosed with asbsence seizures in nov. 07. She has no other neurological issues. She is also on Zarontin- liquid. After the diagnosis in November we had an eeg/bloodwork in december that showed zarontin levels were good. We go on mon. for a sleep deprived eeg. From what we understand from her neurologist the goal is for her to remain on this med - and just up the dosage as she grows. This is still pretty new to me and it is scary. Initial side effects were tiredness, and more frequent hiccups. have not seen any more seizures. good luck to you!
Wow! You are one of the few that I have heard from that had success with the first medicine and hardly any side effects. I am very happy for you and glad to hear a positive story. I hope everything goes well. It is scary to go thru this. DId Zarontin work well for her right away? DId the seizures decrease as soon as you started the medicine? How many seizures was she having? We were on Zarontin with not much success and my 5 year old was starting to show more side effects so after two months we are now trying depakote sprinkles. Feel free to email me if you want. It's so good to talk to others going thru the same thing.
gutepc@comcast.net
Thanks
The Zarontin worked immediately. Although my daughter's teacher said she saw some staring a few weeks ago, i have seen nothing. we go on mon. for another eeg. it is scary - i have no idea if this med will always work. The only advice i can give to parents who may think their child may have this - is to not ignore it. I noticed something with my daughter in august of 07. (staring and eye rolling). thought she was doing it intentionally when i was trying to speak with her. thank god she has a wonderful teacher who saw her having these episodes and got scared when one happened when my daughter was speaking in class. she told the nurse who then told me. i almost needed another set of "eyes" to make it a reality. very easy to miss an absence seizure esp. if you are unaware of what they are. when most people think of seizures - they think of grand-mal type. looking back now from the summer until her diagosis in nov. - my husband, me, her sister, teachers, coaches, etc. seemed to lose patience with her because she seemed to be "missing" moments in time which in actuality she was! still feel alot of guilt about this. it was hard for an new 8 year old to explain to us what was happening esp. since she was not aware it was happening. she finally said it best when she said she feels her "brain goes away for a little while". she is doing very well - def. more tired at night than before. her school has been great. she qualifies for the 504 plan if she ever needs it. to answer your question i think she was having 20 or more a day - had 4 during initial eeg. she looked worn out and not herself - tired, sensitive, hard to concentrate before diagnosis. better now. enough sleep is very important.
Hey there- just wanted to lend some support. I'm not in your situation exactly, but it's close- in my case, I'm the one with the absence seizures. Just recently diagnosed (about 4 months ago) and on Zarontin...seems to be working- have an appt with the neuro end of April, so we'll see from there (keeping my fingers crossed!) It's been a long road to diagnosis/treatment...looking back, they figure these seizures started when I was about 13 (I'm 23 now)...if you want an open heart and a willing ear, send me an email- sarahsluser@gmail.com. I know how frustrating it can be...especially since absence seizures can look like inattention. At least a tonic-clonic looks like a "real" seizure, and people recognize it and know what it is...the problem with absence seizures is lack of public awareness...take care, and hope to hear from you!
How are things??? My e-mail crashed on me the other day and i lost your address. Just wanted you to know I have been thinking of you guys since his last doc appointment. I hope everything is well with you. Take care!!
There is hope!! Tyler, my son, is 7 years old now. We were diagnosed with classic absence seizures last March (07). After four meds we were finally given Zarontin!! Took awhile to adjust the dosage but we MADE IT!! After two months on Zarontin as of 15 JAN, 2008 we have been seizure free!!! We are taking 10ml three times a day. BELIEVE me..it's a very hard thing even though it is not a severe epilepsy but it is upsetting. It has been a long year but we made it. The hardest thing I have ever had to deal with to date. Please if you have any questions contact me. I have been there!!!
stacia.manuel@yahoo.com
Hi, I am new here with an 8 year old son just diagnosed with petit mal/absence seizures. He is now on Keppra 2ml's per day. He was diagnosed around Easter time. We had an EEG last week which showed 2 - 4 second seizures in 20 min. So, we increased his meds. Emotionally, I think he is tolerating it well. He is tired from time to time, but he told me that his life is getting easier for him. Has anyone had experiences with a child pacing? He paces and will do from what it looks like to me, myoclonic type of seizures where he clenches his fists and tightens his arms to stiffen up. I used to think it was anxiety, but, now I think it is all from the epilepsy. Also, anyone try Keppra? I have a feeling he is still having some seizure acitivity. Doc wanted him on Lamictal, but, said it takes too long to build up in his system and he needed to be stablized quickly. On Easter, he showed 30 ab. seizures alone. I am being as patient as I can, but it can be hard from a discipline standpoint. I don't want to ride him to hard as I know he is not feeling his best and is probably still not able to follow what is being said to him with seizure activity going on. However, it can't be the golden ticket to allow him to act anyway he wants. It is such a fine line. Any advice out there?
Thank you,
JKE mom
Hi, I had to reread the post because It sounded so much like my situation. I have not found any posts where someone was taking the same meds as my son.
My son is Gage and he is taking 2 teaspoons of Keppra per day. He has petit mal/absence seizuresHe is still having the seizures and I get frequent responses from the school letting me know he has them everyday. I noticed he had the seizures when he was very young, just starring off and not being responsive. We have had 3 EEG's and the last one being on April 4th. He did the sleep deprived test and he had 4 seizures and they were lasting anywhere from 20-25 seconds long. My son was on 2 medications depakote and another one. He was still having them and I took him off all the meds as they were not working and went to another doctor to start over. She said that Keppra is the prefered drug for kids. I totally understand what you mean with the behavior issues. My son gets a little short tempered and he paces every now and then. And that is not him. He is very well manored and sweet. He just gets so aggitated sometimes. I have searched the net for this medication and that is the side effects. I just take a second and sit with him and try and talk calm and let him know that he can not get mad like that. I have learned that Keppra Peaks in an hour and noticed that is when he kind of gets a little hyper. I am worried that we will never find the right medication to stop these things. It is so sad to see your child go thru this and your so helpless being the parent, you can not do anything. I really do not have allot of advise for you, I am going thru the same thing as you right now and I feel the same way.
Thank you for you response, too. Did you doctor recommend giving your son Vitamin B6 with the Keppra? My doc told me to give our son 50 mg of Vit B 6 with his dose twice a day and it should curb some of the emotions. I have been trying to read more and more about this and have read about this on other websites as a way to help with the irritablity, etc. My son's emotions where sporatic at first, but I do see him calming down and he seems more emotionally stable now. He certainly has his moments, but, I think the B6 is helping. If you are interested, I would call your doc to see how much to give him. My son weighs about 53 pounds and as I mentioned, he is on 50mg twice a day with his Keppra dose. We have another EEG in a couple of weeks, but i know he isn't seizure free. He seemed to have a myoclonic one on Sunday and I saw 2 back to back absence seizures last night. From what I understand, it can be a long haul to get to be seizure free, but it can happen. Trying to think positively and take it day by day until we get it right. This community if full of support and for those that have reached out to me - THANK YOU! It is nice to have people to lean on that are going through the same situations so we can help one another. : )
No, I have not heard of giving the B6 vitamin. I will definately mention that at our next appt next month. He has to get blood drawn to check his levels of Keppra in his system, he is still not seizure free after they have increased it I have been reading and heard that Omega Fish oil - helps with the seizures with children who have the absence seizures. I am going to mention it to my doctor and see if she heard of that. I know when we were in Kansas City hospital - his first doctor. They talked about trying to focus on eating healthy foods- fruits/vegetables and fish & seafood. We do not eat allot fish and he is a real picky eater but I wonder if that would help? I am sure it tastes horrible. I will mention it and leave it all up to his physician. I noticed my son has had them frequently still too. . I do not think they are lasting as long though. Was your son premature? My son was premature and was on a ventalator when he was little. He was sucked out and had to use the tongs..... When they do the EEG they always ask all of those questions and just wondering if that could be a reason. The doctor said they are hereditary but they always ask if he was premature.
My son is starting to realize that he has seizures and will tell me had one at school. I want to find some children books that will help him to understand what he is going through at a kid level. I see there is a kid section here on this site. I might show it to him. Thanks for the advice and support. I agree, this could take a long time but we need to stay positive.