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son,newly diagnosed
Mon, 03/21/2005 - 07:55Comments
RE: son,newly diagnosed
Submitted by robpatti on Wed, 2005-02-23 - 10:13
RE: son,newly diagnosed
Submitted by 2caret on Sat, 2005-03-19 - 20:11
HI Lee K
I know EXACTLY how you feel! My son was 13 when he had his first ever grand mal (tonic clonic) 10 months ago. No family history here either. When it happened, I was home alone with my 3yo son - my hubby was out with our older son. I started screaming, crying , freaking out. I immediatel;y called 911 while my 3yo was crying while sitting in the corner becuz he was scared. I will NEVER forget that day or what my son looked like while seizing. I even have bad dreams about it sometimes. When I called 911, I knew the cop who answered the phone (we live in a very small town). I screamed my address into the phone and said "my son is having a seizure!" and she said "dont worry, we'll be right there!" (and called me by my first name) I was shaking and grabbed my little 3yo and kept saying "its ok, the ambulance is coming and he will be ok" - I'm not sure if I was trying to convince him or me! :) I live everyday wondering if he will have another - like your sons, he is also on depakote ER. We had a bit of a scare a few weeks ago. we thought he was having absence seizures. (he zones out for a sec or 2) and his grades were falling. We have noticed he is not as "happy" as he used to be. I think its a side effect of the meds. He was always a happy fun kid who smiled ALL THE TIME.... not anymore. He is very athletic (football and baseball) and his ability has been affected, but again, we think its from the meds - not the seizure. But hes working thru it - and is determined to not let it get the better of him. We are getting ready for an EEG this week (becuz of the possible absence seizures). He had one in the hospital when he had the first seizure but it was normal. So was his MRI. but they felt it was necessary for him to go on meds becuz he possbily had 3 seizures in 1 week, but only 1 was seen and it was BAD! (He bit his tongue a week prior to the seizure and it was bad, and then woke up with another very bad tongue bite the morning of the seizure I witnessed - so they are counting that as 3) I dont know what to tell you - except try to relax - it took me a while before I let my son stay home alone for more than 30 min. - but now, with the turn of events, I wont.... but I dont let him see my worry!! I make other excuses as to why he has to come with me.... feel free to email me anytime! (2caret@verizon.net) I wish you luck and send hugs!
HI Lee K
I know EXACTLY how you feel! My son was 13 when he had his first ever grand mal (tonic clonic) 10 months ago. No family history here either. When it happened, I was home alone with my 3yo son - my hubby was out with our older son. I started screaming, crying , freaking out. I immediatel;y called 911 while my 3yo was crying while sitting in the corner becuz he was scared. I will NEVER forget that day or what my son looked like while seizing. I even have bad dreams about it sometimes. When I called 911, I knew the cop who answered the phone (we live in a very small town). I screamed my address into the phone and said "my son is having a seizure!" and she said "dont worry, we'll be right there!" (and called me by my first name) I was shaking and grabbed my little 3yo and kept saying "its ok, the ambulance is coming and he will be ok" - I'm not sure if I was trying to convince him or me! :) I live everyday wondering if he will have another - like your sons, he is also on depakote ER. We had a bit of a scare a few weeks ago. we thought he was having absence seizures. (he zones out for a sec or 2) and his grades were falling. We have noticed he is not as "happy" as he used to be. I think its a side effect of the meds. He was always a happy fun kid who smiled ALL THE TIME.... not anymore. He is very athletic (football and baseball) and his ability has been affected, but again, we think its from the meds - not the seizure. But hes working thru it - and is determined to not let it get the better of him. We are getting ready for an EEG this week (becuz of the possible absence seizures). He had one in the hospital when he had the first seizure but it was normal. So was his MRI. but they felt it was necessary for him to go on meds becuz he possbily had 3 seizures in 1 week, but only 1 was seen and it was BAD! (He bit his tongue a week prior to the seizure and it was bad, and then woke up with another very bad tongue bite the morning of the seizure I witnessed - so they are counting that as 3) I dont know what to tell you - except try to relax - it took me a while before I let my son stay home alone for more than 30 min. - but now, with the turn of events, I wont.... but I dont let him see my worry!! I make other excuses as to why he has to come with me.... feel free to email me anytime! (2caret@verizon.net) I wish you luck and send hugs!
RE: son,newly diagnosed
Submitted by batman on Tue, 2005-02-22 - 00:28
Leek, I want you to know right off that I am not a doctor, IÂ’m not a specialist, nor a parent. I am a person with epilepsy and IÂ’m going to try to share what IÂ’ve experienced from having it and what IÂ’ve learned over the past few years.
Neither of your sons have ever had any illness or sick in any way, and just because two of them do have epilepsy, doesnÂ’t mean theyÂ’re sick or ill now either. Epilepsy is neither a disease nor a virus, which means that it uncontagious. It is possible to be passed on genetically, but doesnÂ’t mean that it always will. None of my relatives have epilepsy.
First, your 10-year-old son. The sole purpose of having an EEG done is to see if the patient being tested actually has seizures, if so, then what type are they having and where in their brain are the originating at, this being the seizure focus. The sooner the helpful results come out will help make it easier for the physician to determine which antiepileptic drug [AED] will be most effective to control the seizures. As you saw yourself, with him starting on the Depakote ER took some time to be effective enough to bring the seizures under control. That is great.
Now your 13-year-old son. With him being on Depakote now, whatÂ’s his status? Are his seizures under control? If they are then this is also great. If he isnÂ’t under control yet, then some things may be changed. Changes could be an increase dosage amount of the Depakote heÂ’s on now; Switched over to a completely different medication that may be more effective; or possible a second medication added along with the Depakote.
There still is no know cure for epilepsy, but the ultimate goal is having the seizures controlled with NO side effects from the AEDÂ’s.
Fear is the number one problem for people who have epilepsy or know someone who has epilepsy, and also for those who do not have it and actually see someone having a seizure and don’t know what to do about it. The more information people know about seizures and epilepsy, the easier it is to loose the fear. Let me work with you on some of the first aid steps when you see someone having a ‘grand mal’ seizure [medically called tonic clonic seizure].
Number oneÂ…DO NOT PUT ANYTHING WHATSOEVER IN THE PERSONÂ’S MOUTH!!! They will not swallow their tongue. The more they have in their mouth will block more of their airway. So as theyÂ’re coming out of the seizure their body will be trying to regain their breathing abilities.
There are many other steps necessary, so please go to this website www.epilepsy.com/epilepsy/firstaid.html and read over the simple, common sense steps. Do you call 911? Several separate ‘yes’ answers to this questions. If a person is having their very first time seizure, Yes; if the person has epilepsy and has any one seizure that last more then 5 minutes, Yes; and if the person has multiple grand mal seizures back-to-back, major Yes. This latter one of these three is called ‘Status epilepticus’. It is a medical emergency, and medical help should be obtained immediately. To see more information about it go to the glossary section or to this website www.epilepsy.com/epilepsy/glossary.html#124. One other reason to be taken to ER is if the person has serious injuries.
For any and all seizures, this is the order of importance of what to observe when the person has the seizure. What happens BEFORE the seizure [pre-ictal phase], what happens AFTER the seizure [post-ictal phase] and what happens DURING the seizure taking place [ictal phase]. This is extremely important to tell the physician to help provide a more accurate diagnosis of what type of seizure[s] are taking place.
In order to remember any of what IÂ’ve mentioned about and any future questions you want to ask the doctor, create a logbook or note pad and bring it in during the doctor visits. Not only will this be helpful for you to speak to the doctor, but it will also help to record any necessary steps to doctor explains to you.
If you have any question whatsoever, then please donÂ’t hesitate to post them here on this community support group. This will give you the chance to here other peopleÂ’s stories and experiences theyÂ’ve gone through themselves.
Hang on tight because there are many people here to help you through this, and as time moves on, you might be able to help someone else on here just as well.
Bruce J
Leek, I want you to know right off that I am not a doctor, IÂ’m not a specialist, nor a parent. I am a person with epilepsy and IÂ’m going to try to share what IÂ’ve experienced from having it and what IÂ’ve learned over the past few years.
Neither of your sons have ever had any illness or sick in any way, and just because two of them do have epilepsy, doesnÂ’t mean theyÂ’re sick or ill now either. Epilepsy is neither a disease nor a virus, which means that it uncontagious. It is possible to be passed on genetically, but doesnÂ’t mean that it always will. None of my relatives have epilepsy.
First, your 10-year-old son. The sole purpose of having an EEG done is to see if the patient being tested actually has seizures, if so, then what type are they having and where in their brain are the originating at, this being the seizure focus. The sooner the helpful results come out will help make it easier for the physician to determine which antiepileptic drug [AED] will be most effective to control the seizures. As you saw yourself, with him starting on the Depakote ER took some time to be effective enough to bring the seizures under control. That is great.
Now your 13-year-old son. With him being on Depakote now, whatÂ’s his status? Are his seizures under control? If they are then this is also great. If he isnÂ’t under control yet, then some things may be changed. Changes could be an increase dosage amount of the Depakote heÂ’s on now; Switched over to a completely different medication that may be more effective; or possible a second medication added along with the Depakote.
There still is no know cure for epilepsy, but the ultimate goal is having the seizures controlled with NO side effects from the AEDÂ’s.
Fear is the number one problem for people who have epilepsy or know someone who has epilepsy, and also for those who do not have it and actually see someone having a seizure and don’t know what to do about it. The more information people know about seizures and epilepsy, the easier it is to loose the fear. Let me work with you on some of the first aid steps when you see someone having a ‘grand mal’ seizure [medically called tonic clonic seizure].
Number oneÂ…DO NOT PUT ANYTHING WHATSOEVER IN THE PERSONÂ’S MOUTH!!! They will not swallow their tongue. The more they have in their mouth will block more of their airway. So as theyÂ’re coming out of the seizure their body will be trying to regain their breathing abilities.
There are many other steps necessary, so please go to this website www.epilepsy.com/epilepsy/firstaid.html and read over the simple, common sense steps. Do you call 911? Several separate ‘yes’ answers to this questions. If a person is having their very first time seizure, Yes; if the person has epilepsy and has any one seizure that last more then 5 minutes, Yes; and if the person has multiple grand mal seizures back-to-back, major Yes. This latter one of these three is called ‘Status epilepticus’. It is a medical emergency, and medical help should be obtained immediately. To see more information about it go to the glossary section or to this website www.epilepsy.com/epilepsy/glossary.html#124. One other reason to be taken to ER is if the person has serious injuries.
For any and all seizures, this is the order of importance of what to observe when the person has the seizure. What happens BEFORE the seizure [pre-ictal phase], what happens AFTER the seizure [post-ictal phase] and what happens DURING the seizure taking place [ictal phase]. This is extremely important to tell the physician to help provide a more accurate diagnosis of what type of seizure[s] are taking place.
In order to remember any of what IÂ’ve mentioned about and any future questions you want to ask the doctor, create a logbook or note pad and bring it in during the doctor visits. Not only will this be helpful for you to speak to the doctor, but it will also help to record any necessary steps to doctor explains to you.
If you have any question whatsoever, then please donÂ’t hesitate to post them here on this community support group. This will give you the chance to here other peopleÂ’s stories and experiences theyÂ’ve gone through themselves.
Hang on tight because there are many people here to help you through this, and as time moves on, you might be able to help someone else on here just as well.
Bruce J