Is anyone NOT medicating for Absence Seizures?

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HI - our daughter was diagnosed over the summer with Absence Seizures. Her pediatric neurologist has recommended starting her on Ethosuximide. She has assured us that the side effects are primarily "upset stomach" and that can remedied by taking the medication with food.

We are new to all of this and quite overwhelmed. Currently, these seizures are not interferring with her school work, behavior, or social activities. Since it is most likely that she will "out-grow" them we are reluctant to start medication.

Is there anyone "out there" who has never medicated OR started the medication and then stopped it b/c of the side effects?

We don't want to make the wrong decision. Thank you for any insight.

Comments

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by bec123 on Thu, 2012-03-29 - 11:01

Hi Amy,

My son, like your daughter, was probably having seizures for about two years before we finally had the issue diagnosed. He has temporal lobe epilepsy (absence seizures) that took the form of a severe headache followed by 24 hours of sleep. This occurred at a gradually increasing rate from 1 episode every 6 months (age 5) to eventually 1 episode every month until we started Keppra at age 7. Inititially, we assumed that he was having migraines, but in the end realized that he was having seizures when he started staying awake during the headaches. He then displayed the typical mouth and hand movements and unresponsive state that are associated with this type of seizure. We didn't know what it was, but knew enough to call the neurologist. They scheduled an emergency appointment and an EEG confirmed temporal lobe seizures. Like you, I did not want to start him on medication and actually waited 3 more months from the date of diagnosis to start the medication. His seizures got worse, as the doctor said would most likely happen and we decided to put him on the medication. From what the doctors have told me (I consulted 4 different specialists) and from what I have read (months of reading anything i could get my hands on) having repeated seizures actually increases the likelyhood that you will continue to have them and at an increasing rate and to a worsening degree. As our current doctor eplained, it is like riding a bike. The brain "learns" to have the seizure and each subsequent one gives the brain more practice in having them, so to speak. The medication allows the brain to reset itself and breaks the cyclic pattern. My son has been taking Keppra at it's minimal dosage for almost 2 years now and has not had any noticible seizures. We will be attempting to take him off the medication this summer. Fingers crossed, this will be all it takes. He went through a few months of adjustment to the medication, moodiness, etc. But he has done so well that I am really happy that I took the plunge. He used to get so scared when he would have a seizure and be confused for days afterward. It effected everything. The key is to try to not freak out and keep calm so that your child can keep calm. That makes a huge difference itself. Please let me know if you need any more information. I would love to help you through this difficult and confusing time. X Rebecca

By the way, my son had already been on a strict diet for years that coincided with some of the more popular approaches to diet and epilepsy simply due to the fact that he has had severe food allergies since birth. He is on and was during and before the seizures started, an ample sleep schedule with an attempt to keep environmental stressors to a minimum because it helpe with his allergy symptoms. We even moved to a dry/desert climate from our original mid west state which had a huge positive impact on his allergies, but unfortunately not on the progression of his epilepsy ( we did not expect it to, though and did not move for that reason.) Having said that, it is definitely worth making the environmental changes and even trying the various diet options out there. Nothing should be ruled out. In our case, however, the medication proved to be the best option. Hope this helps. X

Hi Amy, My son, like your daughter, was probably having seizures for about two years before we finally had the issue diagnosed. He has temporal lobe epilepsy (absence seizures) that took the form of a severe headache followed by 24 hours of sleep. This occurred at a gradually increasing rate from 1 episode every 6 months (age 5) to eventually 1 episode every month until we started Keppra at age 7.  Inititially, we assumed that he was having migraines, but in the end realized that he was having seizures when he started staying awake during the headaches. He then displayed the typical mouth and hand movements and unresponsive state that are associated with this type of seizure. We didn't know what it was, but knew enough to call the neurologist. They scheduled an emergency appointment and an EEG confirmed temporal lobe seizures. Like you, I did not want to start him on medication and actually waited 3 more months from the date of diagnosis to start the medication. His seizures got worse, as the doctor said would most likely happen and we decided to put him on the medication. From what the doctors have told me (I consulted 4 different specialists) and from what I have read (months of reading anything i could get my hands on) having repeated seizures actually increases the likelyhood that you will continue to have them and at an increasing rate and to a  worsening degree. As our current doctor eplained, it is like riding a bike. The brain "learns" to have the seizure and each subsequent one gives the brain more practice in having them, so to speak. The medication allows the brain to reset itself and breaks the cyclic pattern. My son has been taking Keppra at it's minimal dosage for almost 2 years now and has not had any noticible seizures. We will be attempting to take him off the medication this summer. Fingers crossed, this will be all it takes. He went through a few months of adjustment to the medication, moodiness, etc. But he has done so well that I am really happy that I took the plunge. He used to get so scared when he would have a seizure and be confused for days afterward. It effected everything. The key is to try to not freak out and keep calm so that your child can keep calm. That makes a huge difference itself. Please let me know if you need any more information. I would love to help you through this difficult and confusing time.  X Rebecca By the way, my son had already been on a strict diet for years that coincided with some of the more popular approaches to diet and epilepsy simply due to the fact that he has had severe food allergies since birth. He is on and was during and before the seizures started, an ample sleep schedule with an attempt to keep environmental stressors to a minimum because it helpe with his allergy symptoms. We even moved to a dry/desert climate from our original mid west state which had a huge positive impact on his allergies, but unfortunately not on the progression of his epilepsy ( we did not expect it to, though and did not move for that reason.) Having said that, it is definitely worth making the environmental changes and even trying the various diet options out there. Nothing should be ruled out. In our case, however, the medication proved to be the best option. Hope this helps. X

Hi Amy,

My son, like your daughter, was probably having seizures for about two years before we finally had the issue diagnosed. He has temporal lobe epilepsy (absence seizures) that took the form of a severe headache followed by 24 hours of sleep. This occurred at a gradually increasing rate from 1 episode every 6 months (age 5) to eventually 1 episode every month until we started Keppra at age 7. Inititially, we assumed that he was having migraines, but in the end realized that he was having seizures when he started staying awake during the headaches. He then displayed the typical mouth and hand movements and unresponsive state that are associated with this type of seizure. We didn't know what it was, but knew enough to call the neurologist. They scheduled an emergency appointment and an EEG confirmed temporal lobe seizures. Like you, I did not want to start him on medication and actually waited 3 more months from the date of diagnosis to start the medication. His seizures got worse, as the doctor said would most likely happen and we decided to put him on the medication. From what the doctors have told me (I consulted 4 different specialists) and from what I have read (months of reading anything i could get my hands on) having repeated seizures actually increases the likelyhood that you will continue to have them and at an increasing rate and to a worsening degree. As our current doctor eplained, it is like riding a bike. The brain "learns" to have the seizure and each subsequent one gives the brain more practice in having them, so to speak. The medication allows the brain to reset itself and breaks the cyclic pattern. My son has been taking Keppra at it's minimal dosage for almost 2 years now and has not had any noticible seizures. We will be attempting to take him off the medication this summer. Fingers crossed, this will be all it takes. He went through a few months of adjustment to the medication, moodiness, etc. But he has done so well that I am really happy that I took the plunge. He used to get so scared when he would have a seizure and be confused for days afterward. It effected everything. The key is to try to not freak out and keep calm so that your child can keep calm. That makes a huge difference itself. Please let me know if you need any more information. I would love to help you through this difficult and confusing time. X Rebecca

By the way, my son had already been on a strict diet for years that coincided with some of the more popular approaches to diet and epilepsy simply due to the fact that he has had severe food allergies since birth. He is on and was during and before the seizures started, an ample sleep schedule with an attempt to keep environmental stressors to a minimum because it helpe with his allergy symptoms. We even moved to a dry/desert climate from our original mid west state which had a huge positive impact on his allergies, but unfortunately not on the progression of his epilepsy ( we did not expect it to, though and did not move for that reason.) Having said that, it is definitely worth making the environmental changes and even trying the various diet options out there. Nothing should be ruled out. In our case, however, the medication proved to be the best option. Hope this helps. X

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by CoughEbansLY@yahoo.com on Tue, 2012-10-16 - 05:42

Hope this helps!

Look into a book called Paleo Mind Paleo Body. The writer is a nuerofeedback specialist who gives gobs of scientific research to back her claim our bodies/brain are still designed for the pre-agricultural ancestral diet we lived on up until now. IE 'Organic grass-fed game and greens'. HERE IS WHAT'S NEW ABOUT putting an epiliptic on this type of diet.

She backs her claim that eating this food feeds your body the TYPE of fat it needs to heal the brain. She cured herself of more than one mental disorder (which we see all over this site) and has seen hundreds of others get the same result. Give your skin Vit E when you have a sun burn right? Give your BRAIN which is mostly FAT the GOOD fat and it will HEAL.

My fifteen year old little brother has been dealing with E for two years now. We don't know if it will go away. For the past year he has been having a GM every 7 and then 13 days like clockwork and has had his bouts with anxiety and depression. But never so bad as the Kep-Rage that had him banging on my moms door with a baseball bat and threatening scuicide when only a few weeks early he was literally happy-go-lucky...so we are still debating whether to medicate. The thing is, As his older sister I was wondering when I might have to do a serious step-in/intervention when he actually started getting better.

His seizures are gradually lessoning and his good mood/mellow times seem to be here for longer. The thing is we are dealing with a teenager here. The poor kid does not want to be missing school in the morning because he is too anxious/"twitchy"; he has those too.

He may grow out of it. This may be him getting better. We may have made his life worse by staving off traditional treatment. He may have killed himself if we kept him on it. We pray we pray we pray.

The diet is a gem of a resource. He looks like such a healthy strapping young man and he is a good athlete with plenty of energy because he is eating such incredibly nutricious food. It seems like good health is a blessing that always accompanies good mental health.

 Hope this helps!  Look into a book called Paleo Mind Paleo Body. The writer is a nuerofeedback specialist who gives gobs of scientific research to back her claim our bodies/brain are still designed for the pre-agricultural ancestral diet we lived on up until now. IE 'Organic grass-fed game and greens'. HERE IS WHAT'S NEW ABOUT putting an epiliptic on this type of diet. She backs her claim that eating this food feeds your body the TYPE of fat it needs to heal the brain. She cured herself of more than one mental disorder (which we see all over this site) and has seen hundreds of others get the same result. Give your skin Vit E when you have a sun burn right? Give your BRAIN which is mostly FAT the GOOD fat and it will HEAL. My fifteen year old little brother has been dealing with E for two years now. We don't know if it will go away. For the past year he has been having a GM every 7 and then 13 days like clockwork and has had his bouts with anxiety and depression. But never so bad as the Kep-Rage that had him banging on my moms door with a baseball bat and threatening scuicide when only a few weeks early he was literally happy-go-lucky...so we are still debating whether to medicate. The thing is, As his older sister I was wondering when I might have to do a serious step-in/intervention when he actually started getting better. His seizures are gradually lessoning and his good mood/mellow times seem to be here for longer. The thing is we are dealing with a teenager here. The poor kid does not want to be missing school in the morning because he is too anxious/"twitchy"; he has those too.   He may grow out of it. This may be him getting better. We may have made his life worse by staving off traditional treatment. He may have killed himself if we kept him on it. We pray we pray we pray. The diet is a gem of a resource. He looks like such a healthy strapping young man and he is a good athlete with plenty of energy because he is eating such incredibly nutricious food. It seems like good health is a blessing that always accompanies good mental health.

Hope this helps!

Look into a book called Paleo Mind Paleo Body. The writer is a nuerofeedback specialist who gives gobs of scientific research to back her claim our bodies/brain are still designed for the pre-agricultural ancestral diet we lived on up until now. IE 'Organic grass-fed game and greens'. HERE IS WHAT'S NEW ABOUT putting an epiliptic on this type of diet.

She backs her claim that eating this food feeds your body the TYPE of fat it needs to heal the brain. She cured herself of more than one mental disorder (which we see all over this site) and has seen hundreds of others get the same result. Give your skin Vit E when you have a sun burn right? Give your BRAIN which is mostly FAT the GOOD fat and it will HEAL.

My fifteen year old little brother has been dealing with E for two years now. We don't know if it will go away. For the past year he has been having a GM every 7 and then 13 days like clockwork and has had his bouts with anxiety and depression. But never so bad as the Kep-Rage that had him banging on my moms door with a baseball bat and threatening scuicide when only a few weeks early he was literally happy-go-lucky...so we are still debating whether to medicate. The thing is, As his older sister I was wondering when I might have to do a serious step-in/intervention when he actually started getting better.

His seizures are gradually lessoning and his good mood/mellow times seem to be here for longer. The thing is we are dealing with a teenager here. The poor kid does not want to be missing school in the morning because he is too anxious/"twitchy"; he has those too.

He may grow out of it. This may be him getting better. We may have made his life worse by staving off traditional treatment. He may have killed himself if we kept him on it. We pray we pray we pray.

The diet is a gem of a resource. He looks like such a healthy strapping young man and he is a good athlete with plenty of energy because he is eating such incredibly nutricious food. It seems like good health is a blessing that always accompanies good mental health.

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by WTH1963 on Tue, 2012-10-16 - 10:34

Our Daughter, like yours, was diagnosed with absence seizures (just prior to her 6th birthday). She has just turned 7 and we have been medicating her since the diagnosis. Her life is normal with the meds. She takes Levetirace each morning and evening. It is as simple as taking a "vitamin" at breakfast and before bed, though with an oral syringe. She has been a wonderful trooper with taking her meds and the results have been as if we had never had epilepsy.

I understand that there are many that have preconceptions and concerns about medicating their children. There had been much media buzz about the general topic, though in a vast expanse of illnesses and conditions. Everyone is naturally and primarily concerned with their child's well being. Please understand that there are some conditions that are more "controllable" than others. In our case, and from our understanding of the absence seizures of our daughter's epilepsy, this is a controllable condition. Other than the actions of taking the meds each day, her life is happy and normal. Without the medication, the multiple daily episodes and the safety issues associated, do have a great effect on daily life and routine. I feel strong with our rationalization to follow through with the medication. Without it, there are always concerns of walking into something, dropping, spilling, hurting and a notion of needing a 24/7 "spotter". With seizures, her ability to play on the playground, ride a bike, or engage in other activities (including swimming) would be compromised. Missing out on the ability of the "normal" childhood would also be compromised.

In this instance, we are fortunate that her condition has medication that provides her an option for all of us to engage in her normal upbringing and routine. Please do not discount this option. I fully understand and recognise the choices for each family. Please consider all aspects and effects of the decision and do not stand on the ceremony of a general issue. Consider whatever it takes to allow your child to have the normal lifestyle. They cannot thank you now, but they may later.

Our decision was right for us and we are thankful for it. You will make the right choice for your family. Good luck and best wishes for you your family and precious daughter.

Our Daughter, like yours, was diagnosed with absence seizures (just prior to her 6th birthday).  She has just turned 7 and we have been medicating her since the diagnosis.  Her life is normal with the meds.  She takes Levetirace each morning and evening.  It is as simple as taking a "vitamin" at breakfast and before bed, though with an oral syringe.  She has been a wonderful trooper with taking her meds and the results have been as if we had never had epilepsy.  I understand that there are many that have preconceptions and concerns about medicating their children.  There had been much media buzz about the general topic, though in a vast expanse of illnesses and conditions.  Everyone is naturally and primarily concerned with their child's well being.  Please understand that there are some conditions that are more "controllable" than others.  In our case, and from our understanding of the absence seizures of our daughter's epilepsy, this is a controllable condition.  Other than the actions of taking the meds each day, her life is happy and normal.  Without the medication, the multiple daily episodes and the safety issues associated, do have a great effect on daily life and routine.  I feel strong with our rationalization to follow through with the medication.  Without it, there are always concerns of walking into something, dropping, spilling, hurting and a notion of needing a 24/7 "spotter".  With seizures, her ability to play on the playground, ride a bike, or engage in other activities (including swimming) would be compromised.  Missing out on the ability of the "normal" childhood would also be compromised.   In this instance, we are fortunate that her condition has medication that provides her an option for all of us to engage in her normal upbringing and routine.  Please do not discount this option.  I fully understand and recognise the choices for each family.  Please consider all aspects and effects of the decision and do not stand on the ceremony of a general issue.  Consider whatever it takes to allow your child to have the normal lifestyle.  They cannot thank you now, but they may later. Our decision was right for us and we are thankful for it.  You will make the right choice for your family.  Good luck and best wishes for you your family and precious daughter.  

Our Daughter, like yours, was diagnosed with absence seizures (just prior to her 6th birthday). She has just turned 7 and we have been medicating her since the diagnosis. Her life is normal with the meds. She takes Levetirace each morning and evening. It is as simple as taking a "vitamin" at breakfast and before bed, though with an oral syringe. She has been a wonderful trooper with taking her meds and the results have been as if we had never had epilepsy.

I understand that there are many that have preconceptions and concerns about medicating their children. There had been much media buzz about the general topic, though in a vast expanse of illnesses and conditions. Everyone is naturally and primarily concerned with their child's well being. Please understand that there are some conditions that are more "controllable" than others. In our case, and from our understanding of the absence seizures of our daughter's epilepsy, this is a controllable condition. Other than the actions of taking the meds each day, her life is happy and normal. Without the medication, the multiple daily episodes and the safety issues associated, do have a great effect on daily life and routine. I feel strong with our rationalization to follow through with the medication. Without it, there are always concerns of walking into something, dropping, spilling, hurting and a notion of needing a 24/7 "spotter". With seizures, her ability to play on the playground, ride a bike, or engage in other activities (including swimming) would be compromised. Missing out on the ability of the "normal" childhood would also be compromised.

In this instance, we are fortunate that her condition has medication that provides her an option for all of us to engage in her normal upbringing and routine. Please do not discount this option. I fully understand and recognise the choices for each family. Please consider all aspects and effects of the decision and do not stand on the ceremony of a general issue. Consider whatever it takes to allow your child to have the normal lifestyle. They cannot thank you now, but they may later.

Our decision was right for us and we are thankful for it. You will make the right choice for your family. Good luck and best wishes for you your family and precious daughter.

Is anyone NOT medicating for Absence Seizures?

Comments

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by bec123 on Thu, 2012-03-29 - 11:01

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by CoughEbansLY@yahoo.com on Tue, 2012-10-16 - 05:42

Re: Is anyone NOT medicating for Absence Seizures?

Submitted by WTH1963 on Tue, 2012-10-16 - 10:34

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