My 5 year old son had his first siezure on 2/8/2009. He had two more back to back on 4/20/2009. The first siezure we did not see. The second two my wife and I witnessed. From what I have read it appears to be grand -Mal siezures. His body shook and his eyes rolled back some. His arms or legs did not move that much and they lasted less than 2 minutes each. Our neurologist prescribed keppra over the phone to our emergency room doctor. Is this to soon to start medication? From what I have read the medication is life changing by it self.
How many siezures before meds?
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epileric
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Welcome to CWE
There's definitely a lot of parents here that can share their experiences with their children & epilepsy control methods.
Medication can be life changing but it seems to be standard procedure for doctors & neurologists. There really doesn't seem to be any other procedure that is recognized by the medical community as a standard to prevent/control seizures.
There are many people here using various other methods that you might want to check out.
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
There's definitely a lot of parents here that can share their experiences with their children & epilepsy control methods.
Medication can be life changing but it seems to be standard procedure for doctors & neurologists. There really doesn't seem to be any other procedure that is recognized by the medical community as a standard to prevent/control seizures.
There are many people here using various other methods that you might want to check out.
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
jaysmom
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welcome rockhead, this is a great family here. i sure enjoy it.
my son too has seizures, a few different types.
we chose to not treat and just see where it went for a while....didnt go away.
then we tried high vitamins for a year or so....didnt go away.
now he has been on tegretol for a year and a half.....still not going away.
we didnt like the idea of starting right away either so tried different things.
every single person will have different theories, stories, responses to meds etc etc....
the more a person learns, the more a person understands, the easier it may feel to make a decision to which treatment ~ if any ~ to choose.
good luck with your little guy and keep us posted with what happens.
my son too has seizures, a few different types.
we chose to not treat and just see where it went for a while....didnt go away.
then we tried high vitamins for a year or so....didnt go away.
now he has been on tegretol for a year and a half.....still not going away.
we didnt like the idea of starting right away either so tried different things.
every single person will have different theories, stories, responses to meds etc etc....
the more a person learns, the more a person understands, the easier it may feel to make a decision to which treatment ~ if any ~ to choose.
good luck with your little guy and keep us posted with what happens.
skillefer
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Actually Rockhead,
medicating after two confirmed seizures, as well as the dignosis of epilepsy is the standard practice. The reason why, is because the longer a person has uncontrolled seizures, the more damage can occur to the brain. So, to try to stop the seizures, doctor's prescribe meds. Now, meds only work for about 60-70% of the people who take them. But the docs tend to think that's the best bet. There are other treatment options such as vitamin therapy, EEG neurofeedback, diet therapy, etc...but meds have the most number of large scale studies to back them up. Epilepsy is a very unique condition. It can appear in one person one way, and in another person in a different way. Meds that work for one person with grand mals may not have any effect or even increase the number of seizures in another person with grand mals. The choice to medicate or not to, or to use meds along with complimentary therapies is a difficult one to make. Some people show obvious side effects of medication use...others take meds all their life with few if any signs of medication side effects. For example, I have tonic clonics...I took phenobarbital for over 20 years with very few if any side effects. The only reason I was switched off of it was because I got pregnant, plus there were signs that it was failing to work as well for me. And yes, that is another hazard. A person can take meds for a long period of time and then have them fail to be effective suddenly. Other people I know outgrew their seizures as adults. And still others have seizures, get treated with meds for a few years, and then get weaned off and do fine...no seizures. Still others, like myself, are stuck on medication for the rest of our lives, because when we try to quit meds (under the care of a doctor of course) we end up having more seizures....and not only that, but they can be more difficult to control once they flare back up. Jay's mom and Epileric are both right. The best thing you can do is educate yourself, be watchful, see if there are any changes in your child. The most common reaction to keppra is a high degree of irritability. It's called kepprage among users of keppra. And many find that a vitamin b-6 supplement helps reduce it. But that's a discussion best had with your neuro. The more informed you are, the better the dialogue you can have with your neuro. So feel free to ask questions, chime in, or just vent.
medicating after two confirmed seizures, as well as the dignosis of epilepsy is the standard practice. The reason why, is because the longer a person has uncontrolled seizures, the more damage can occur to the brain. So, to try to stop the seizures, doctor's prescribe meds. Now, meds only work for about 60-70% of the people who take them. But the docs tend to think that's the best bet. There are other treatment options such as vitamin therapy, EEG neurofeedback, diet therapy, etc...but meds have the most number of large scale studies to back them up. Epilepsy is a very unique condition. It can appear in one person one way, and in another person in a different way. Meds that work for one person with grand mals may not have any effect or even increase the number of seizures in another person with grand mals. The choice to medicate or not to, or to use meds along with complimentary therapies is a difficult one to make. Some people show obvious side effects of medication use...others take meds all their life with few if any signs of medication side effects. For example, I have tonic clonics...I took phenobarbital for over 20 years with very few if any side effects. The only reason I was switched off of it was because I got pregnant, plus there were signs that it was failing to work as well for me. And yes, that is another hazard. A person can take meds for a long period of time and then have them fail to be effective suddenly. Other people I know outgrew their seizures as adults. And still others have seizures, get treated with meds for a few years, and then get weaned off and do fine...no seizures. Still others, like myself, are stuck on medication for the rest of our lives, because when we try to quit meds (under the care of a doctor of course) we end up having more seizures....and not only that, but they can be more difficult to control once they flare back up. Jay's mom and Epileric are both right. The best thing you can do is educate yourself, be watchful, see if there are any changes in your child. The most common reaction to keppra is a high degree of irritability. It's called kepprage among users of keppra. And many find that a vitamin b-6 supplement helps reduce it. But that's a discussion best had with your neuro. The more informed you are, the better the dialogue you can have with your neuro. So feel free to ask questions, chime in, or just vent.
Thank you so much for your responses. I know this is going to be a trying road ahead and I sure do appreciate having people to talk to about it. I pray that he is one of the ones that takes the medication well. So far he is just a little extra tired.
joan
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My son at 15 had his first grand mal 7/05. We declined meds thinking it was a fluke. He had his second one 1/06. HE went on meds. He was later dx as a genetic epileptic. JME aka JANZ syndrome. Hes 19 now. Does semi well on lamictal. 375 daily 5'11 140lbs.
Meds arent always the anwser but having uncontrolled grand mals, not good either. Please take time to go through your options. This site has tons of great info.
I wish you well
joan*
Meds arent always the anwser but having uncontrolled grand mals, not good either. Please take time to go through your options. This site has tons of great info.
I wish you well
joan*
tripletdad
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I would have to agree
With getting on the meds as soon as possible. Scaring can develop over time with uncontrolled E and that brings its own set of problems. I have JME (aka, JME) So I have simple partials and myoclonic jerks with the occasional Grand Mal. I am 40 and was diagnosed around 8/9 yrs old and went on meds asap. This helped my grand mals but I had a lot of simple partials over that time but I lead a normal life growing up. I learned to take care of myself from an early age, eating right, exercise and no binge drinking etc. All of that helps but the meds are important, despite the side effects.
I am all for making an educated decision that includes weighing the pros and cons of the meds but that also means you have to look at what the short and long term risks of not being on the meds are, are they are many.
Keep in mind there are no perfect meds, the best thing I can say about the med s is be proactive with your doctor and keepa journal.
Good Luck!
With getting on the meds as soon as possible. Scaring can develop over time with uncontrolled E and that brings its own set of problems. I have JME (aka, JME) So I have simple partials and myoclonic jerks with the occasional Grand Mal. I am 40 and was diagnosed around 8/9 yrs old and went on meds asap. This helped my grand mals but I had a lot of simple partials over that time but I lead a normal life growing up. I learned to take care of myself from an early age, eating right, exercise and no binge drinking etc. All of that helps but the meds are important, despite the side effects.
I am all for making an educated decision that includes weighing the pros and cons of the meds but that also means you have to look at what the short and long term risks of not being on the meds are, are they are many.
Keep in mind there are no perfect meds, the best thing I can say about the med s is be proactive with your doctor and keepa journal.
Good Luck!
RobinN
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We went immediately to meds after the first two seizures. Began having vision problems, which I attributed to seizure problems. I now know that this was drug related. We then tried another one. This one caused a lot of suicidal thoughts. At first I just thought this was due to the stress and stigma of having seizures. Then news came out about the fact that these drugs have a warning about suicidal tendencies.
We tried a third medication which cause extreme muscle soreness. The some signs of rash, and once again we tried a 4th medication. There were also complications with sores throughout the mouth and throat.
I decided to get serious about alternatives. We changed her nutritional choices, and added vitamin and minerals to support brain and body health. A year ago we also began neurofeedback. She has far better control off of meds than on them. She also has her life back.
We tried a third medication which cause extreme muscle soreness. The some signs of rash, and once again we tried a 4th medication. There were also complications with sores throughout the mouth and throat.
I decided to get serious about alternatives. We changed her nutritional choices, and added vitamin and minerals to support brain and body health. A year ago we also began neurofeedback. She has far better control off of meds than on them. She also has her life back.
RobinN
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My daughter was worse off from the meds she took, than the 58 seizures she has had.
Her memory was shot on the meds. She was lethargic and hated herself.
Now she has her spirit back, and is healthier due to changes in her diet. It can be something as simple as a food sensitivity. Why mask that with a drug. Figure out the cause. Your child was fine for 5 years. What has lowered his threshold?
Her memory was shot on the meds. She was lethargic and hated herself.
Now she has her spirit back, and is healthier due to changes in her diet. It can be something as simple as a food sensitivity. Why mask that with a drug. Figure out the cause. Your child was fine for 5 years. What has lowered his threshold?
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I can handle the side effects of my meds a lot than busting my head open and getting stitches or staples. I'm on 4 meds right now and know I'll never be able come off any of my meds all the way.I"ve accepted it though and just take my medicine even though it doesn't control my seizures completely.
Belinda:twocents:
Belinda:twocents:
My 5 year old son had his first siezure on 2/8/2009. He had two more back to back on 4/20/2009. The first siezure we did not see. The second two my wife and I witnessed. From what I have read it appears to be grand -Mal siezures. His body shook and his eyes rolled back some. His arms or legs did not move that much and they lasted less than 2 minutes each. Our neurologist prescribed keppra over the phone to our emergency room doctor. Is this to soon to start medication? From what I have read the medication is life changing by it self.
*update*?
Just had a couple follow up questions. My son has not had any more siezures to date. He has been taking keppra and it seems to have little to no side effects. But we have noticed that during sleep he will often go into a 5-10 minute episode of either shaking his head or thrusting his hips. I am not sure if it is a siezure or not. His neurologist seemed to think it was some sort of sleeping disorder. I wonder if it could be linked to the keppra or these are actually siezures. One more thing during these episodes he can be awakened like normal so that makes me think they are not siezures. Has anyone else experienced anything like this? Thanks
*update*?
Just had a couple follow up questions. My son has not had any more siezures to date. He has been taking keppra and it seems to have little to no side effects. But we have noticed that during sleep he will often go into a 5-10 minute episode of either shaking his head or thrusting his hips. I am not sure if it is a siezure or not. His neurologist seemed to think it was some sort of sleeping disorder. I wonder if it could be linked to the keppra or these are actually siezures. One more thing during these episodes he can be awakened like normal so that makes me think they are not siezures. Has anyone else experienced anything like this? Thanks
RobinN
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I have not experienced anything such as this, but from my knowledge, during a tonic clonic someone can not wake up. Other types of seizures however, the person can be very aware of his surroundings but can not stop the episode on demand. They certainly sound like seizures, but if when you wake him, he can stop the activity, I would say they are not seizures.
Has he been tested for parisites?
Has he been tested for parisites?
skillefer
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I agree with Robinn's reply....also, if you have a video camera, try recording the next episode so that your neuro can see exactly what's going on. Also, ask the neuro to oder a sleep study and video eeg. Quite a few people with epilepsy also have sleep disorders. Enough that some researchers are studying to see if there is a connection. Also, a video eeg or eeg that covers 72 hours might catch any seizure activity. It could be your child has more than one type of seizure. Other then that, glad to hear that the meds are working for your son.
I totally
agree with Skilly. And if you can't get in a 72 hour eeg, at least try for a 48 hour. This will give the neuro plenty of information to look at regarding what's going on inside your son's brain at all times, especially while he is sleeping.
My seizures are of the nocturnal nature only, and I have 4 types, but none similar to what he experiences. It almost sounds like a partial seizure that is occurring while he is dreaming. Sometimes there will be a behavior like a smacking of the lips, picking at something, etc, which is called an automatism--because they are done without awareness, and for some amount of time, until the brain decides to settle down and end it.
DO have the sleep study done, but also have that extended video EEG done, too. One or the other will yield you some results...
Good luck,
Meetz
:rock:
agree with Skilly. And if you can't get in a 72 hour eeg, at least try for a 48 hour. This will give the neuro plenty of information to look at regarding what's going on inside your son's brain at all times, especially while he is sleeping.
My seizures are of the nocturnal nature only, and I have 4 types, but none similar to what he experiences. It almost sounds like a partial seizure that is occurring while he is dreaming. Sometimes there will be a behavior like a smacking of the lips, picking at something, etc, which is called an automatism--because they are done without awareness, and for some amount of time, until the brain decides to settle down and end it.
DO have the sleep study done, but also have that extended video EEG done, too. One or the other will yield you some results...
Good luck,
Meetz
:rock:
Update for people searching for good outcomes.
My son has not had another siezure since w/2009! Over a year! He is almost completely weined off medication (under 2cc). Wanted to let people know what worked for us. Not sure exactly what worked besides our Jesus working for us. But I thought I would post up everything we did and found.
1. Pray. If you do not believe you should consider it.
2. Naturopathic doctor. Found some food sensitivities. Changed to a mostly organic, gluten free, dairy free diet. Suggested a very potent mineral vitamin from Brain child nutritionals. This diet along with the medicine was all we did for the first six months. Still having weird sleep movements.
3. Dietician. Wife my son to a dietician to make sure he was getting food through the special diet. First think the dietician asked was if he had been tested for Candida. We had him tested and his counts were very high. Put on a special diet and with in a couple weeks his sleeping pattern became normal. No more twitching or crazy movements.
He will be completely off the Keppra by the end of summer. :clap::woot:
I do not know if God just healed my son or if he just led us down the path to find the cause. Either way I just praise him. And pray for all of you parents dealing with this. If you have any questions regarding the foods or vitamins we gave our son please email me because I will most likely not be checking this forum much.
Ben
My son has not had another siezure since w/2009! Over a year! He is almost completely weined off medication (under 2cc). Wanted to let people know what worked for us. Not sure exactly what worked besides our Jesus working for us. But I thought I would post up everything we did and found.
1. Pray. If you do not believe you should consider it.
2. Naturopathic doctor. Found some food sensitivities. Changed to a mostly organic, gluten free, dairy free diet. Suggested a very potent mineral vitamin from Brain child nutritionals. This diet along with the medicine was all we did for the first six months. Still having weird sleep movements.
3. Dietician. Wife my son to a dietician to make sure he was getting food through the special diet. First think the dietician asked was if he had been tested for Candida. We had him tested and his counts were very high. Put on a special diet and with in a couple weeks his sleeping pattern became normal. No more twitching or crazy movements.
He will be completely off the Keppra by the end of summer. :clap::woot:
I do not know if God just healed my son or if he just led us down the path to find the cause. Either way I just praise him. And pray for all of you parents dealing with this. If you have any questions regarding the foods or vitamins we gave our son please email me because I will most likely not be checking this forum much.
Ben
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Congrats Rockhead, I'm glad things have worked out so well for you and your son! Diet and proper nutrition seem to play a major role in helping those with seizure disorders -- I with the medical establishment would take a closer look at them (rather than relying solely on pills).