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Why do we care when they don't?


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Hello anyone that reads this.  Today at approximately 2:30 PM my son had one of the worst seizures he has ever had.  My daughter called me at 2:41 PM to let me know because my buddy knew I was taking a nap to go to dinner at my son's house later in the day.  This seizure was bad because he was totally out of it for a little over 3 minutes.  He was dark purple and didn't know anybody when he was coming out of it.  A neighbor of his is a nurse and she convinced my daughter to let an ambulance take him to the emergency room due to how hard a time he was having coming out of the seizure.  The ER checked his blood and performed an EKG and both came back normal which was a big relief.  They got in touch with his neurologist and she had them give him another dose of his seizure meds.  About 4.5 hours later he was released and his sister packed him an overnight bag so that she could keep and eye on him.  She sent me a text about 15 minutes ago telling me that he is very shaky, worse than she has ever seen from any of his multiple seizures.

His sister called me on the way to her house to let me know that he would be spending the night so she could keep and eye on him.  During that call was the first time that I have heard his voice since Friday around lunch time.  As I always do, I start asking him questions to try and help with what might have caused this seizure.  He immediately went off on me and showed no sign of concern.  My question to you all is, am I over thinking this or should I just not care?  He knows that anytime he has a seizure that he is going to go through the Spanish Inquisition because that is what all the experts told us to do when we went to an Epilepsy camp.  So, not having his mother anymore, it is only myself and his sister that care enough to take notes from what all might have transpired before his seizure.  My main question is, "Why do we care when they don't?"  Am I over reacting?  Should I approach all this from a different angle?  Any help would be greatly appreciated!!  My anxiety is off the charts and I am stressed out to the max!

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A history of seizures requires mostly an EEG, not an EKG, unless the respiratory or cardiac systems are involved Those last two are really important. I know this personally.

But if we are talking about epilepsy or a related condition, that's Electroencephalogram, EEG. I'm sure you know this already, but many people do not, and when it happens to a loved one, it can be extremely scary. Otherwise I'd shut the hell up and wish you the best.

I have worked with people who were experiencing such things. There are procedures that people can take to ensure their safety: And all of these people were very accomplished in their lives and careers. It just happens.

I cannot diagnose anything. I only play a squirrel on CC. But if it is epilepsy, or any other diagnosed or non-diagnosed problem, well, I'd just do what I could to support my loved one. My best hopes in this situation for you, bro.

Find the best medical care you can and know that we're behind you on this issue. Nothing is more important than ones child.

 

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5 hours ago, HarleyFatboy said:

Hello anyone that reads this.  Today at approximately 2:30 PM my son had one of the worst seizures he has ever had.  My daughter called me at 2:41 PM to let me know because my buddy knew I was taking a nap to go to dinner at my son's house later in the day.  This seizure was bad because he was totally out of it for a little over 3 minutes.  He was dark purple and didn't know anybody when he was coming out of it.  A neighbor of his is a nurse and she convinced my daughter to let an ambulance take him to the emergency room due to how hard a time he was having coming out of the seizure.  The ER checked his blood and performed an EKG and both came back normal which was a big relief.  They got in touch with his neurologist and she had them give him another dose of his seizure meds.  About 4.5 hours later he was released and his sister packed him an overnight bag so that she could keep and eye on him.  She sent me a text about 15 minutes ago telling me that he is very shaky, worse than she has ever seen from any of his multiple seizures.

His sister called me on the way to her house to let me know that he would be spending the night so she could keep and eye on him.  During that call was the first time that I have heard his voice since Friday around lunch time.  As I always do, I start asking him questions to try and help with what might have caused this seizure.  He immediately went off on me and showed no sign of concern.  My question to you all is, am I over thinking this or should I just not care?  He knows that anytime he has a seizure that he is going to go through the Spanish Inquisition because that is what all the experts told us to do when we went to an Epilepsy camp.  So, not having his mother anymore, it is only myself and his sister that care enough to take notes from what all might have transpired before his seizure.  My main question is, "Why do we care when they don't?"  Am I over reacting?  Should I approach all this from a different angle?  Any help would be greatly appreciated!!  My anxiety is off the charts and I am stressed out to the max!

I can't give you any sort of medical advice on this Harley...but you care because you're his dad. That's what we do. I'm no expert but, imo, you've gotta continue asking him about his seizures and show that you care. Just be  prepared for the backlash and try not to get drawn into a slanging match. But I think the moment you stop showing him that you care, he'll know, and things will be much worse. 
It sounds real scary, and I hope you and your son can manage this Harley... Dig in!

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7 hours ago, HarleyFatboy said:

Hello anyone that reads this.  Today at approximately 2:30 PM my son had one of the worst seizures he has ever had.  My daughter called me at 2:41 PM to let me know because my buddy knew I was taking a nap to go to dinner at my son's house later in the day.  This seizure was bad because he was totally out of it for a little over 3 minutes.  He was dark purple and didn't know anybody when he was coming out of it.  A neighbor of his is a nurse and she convinced my daughter to let an ambulance take him to the emergency room due to how hard a time he was having coming out of the seizure.  The ER checked his blood and performed an EKG and both came back normal which was a big relief.  They got in touch with his neurologist and she had them give him another dose of his seizure meds.  About 4.5 hours later he was released and his sister packed him an overnight bag so that she could keep and eye on him.  She sent me a text about 15 minutes ago telling me that he is very shaky, worse than she has ever seen from any of his multiple seizures.

His sister called me on the way to her house to let me know that he would be spending the night so she could keep and eye on him.  During that call was the first time that I have heard his voice since Friday around lunch time.  As I always do, I start asking him questions to try and help with what might have caused this seizure.  He immediately went off on me and showed no sign of concern.  My question to you all is, am I over thinking this or should I just not care?  He knows that anytime he has a seizure that he is going to go through the Spanish Inquisition because that is what all the experts told us to do when we went to an Epilepsy camp.  So, not having his mother anymore, it is only myself and his sister that care enough to take notes from what all might have transpired before his seizure.  My main question is, "Why do we care when they don't?"  Am I over reacting?  Should I approach all this from a different angle?  Any help would be greatly appreciated!!  My anxiety is off the charts and I am stressed out to the max!

Hi Harley,sorry to hear of your son's epilepsy.I'm epileptic but have been siezure free for a long time now(with meds of course).As for your son's attitude do you think it could be that he is embarrassed and simply doesn't want to talk about it.I know I was as it happened twice in front of family members and when I recovered and realised what they had seen I certainly didn't want to discuss it.Perhaps if you adopt a more softly,softly approach.Just let him know you are there to support him and that's about all you can do.I'm sure if he wants to talk about it you'll be the first one he'll turn to.

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9 hours ago, Foamy T. Squirrel said:

A history of seizures requires mostly an EEG, not an EKG, unless the respiratory or cardiac systems are involved Those last two are really important. I know this personally.

But if we are talking about epilepsy or a related condition, that's Electroencephalogram, EEG. I'm sure you know this already, but many people do not, and when it happens to a loved one, it can be extremely scary. Otherwise I'd shut the hell up and wish you the best.

I have worked with people who were experiencing such things. There are procedures that people can take to ensure their safety: And all of these people were very accomplished in their lives and careers. It just happens.

I cannot diagnose anything. I only play a squirrel on CC. But if it is epilepsy, or any other diagnosed or non-diagnosed problem, well, I'd just do what I could to support my loved one. My best hopes in this situation for you, bro.

Find the best medical care you can and know that we're behind you on this issue. Nothing is more important than ones child.

 

Yes, thank you Foamy, I misspoke on the EKG...It was an EEG and not an EKG.  I guess I should have went back and read what I was about to post, I would have caught that!  I was just shook up by this seizure because it was the longest one he's ever had, he was in full seize mode for over 3 minutes and from what I was told, he looked really bad, deep purple coloration from lack of oxygen and lots of blood.  The blood came from him almost biting the last 1/4 inch of his tongue off.  I was also told later that he didn't seem like his usual self that whole day, when he was trying to put gas in his lawnmower, he was shaking so bad he was spilling it everywhere which should have been a major clue that something was coming and fortunately my buddy who is living with him understood this but didn't want to hover over him all day because my son would have noticed this and would have asked him...WTF?  Totally understandable to a person in his condition and he's has gotten on to me for doing it in the past.

We have tried our best to get more help but as an Epileptic, one would have to have at minimum a seizure a day to warrant it.  I don't want to appear ignorant here but what kind of procedures are you referring to exactly?  I've wanted him to seek other neurologist's for any differences in opinions or new treatments they might have but he is very stubborn and just says that he likes the neurologist he already has.

Love and support is about the only thing I know I can do.  He's a grown man with a good job and he will be the first to tell you so lol.  I'm probably 90% the blame because i am overly cautious about many things he does in his life and I go overboard with safety measures he should take while doing them.  For instance, when he goes skydiving there isn't much I can do but pray that he makes it down safely, but when he goes deep sea fishing I can make sure that someone will have an eye on him at all times and that he wears a very slim fitting life jacket that inflates when it hits the water in case he tumbles overboard during a seizure....sorry, i'm just anal that way!!

Thanks for your reply Foamy, always appreciated!!

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4 hours ago, nagachilli2 said:

I can't give you any sort of medical advice on this Harley...but you care because you're his dad. That's what we do. I'm no expert but, imo, you've gotta continue asking him about his seizures and show that you care. Just be  prepared for the backlash and try not to get drawn into a slanging match. But I think the moment you stop showing him that you care, he'll know, and things will be much worse. 
It sounds real scary, and I hope you and your son can manage this Harley... Dig in!

Thank you Naga, I will always continue to ask him about things that might have led up to his seizures such as proper rest, diet, and medications taken.  He knows this simply because I have been doing it ever since he was diagnosed with Epilepsy at the age of 9...he is now 34.  I guess I just need to work on my approach because as all of you know, I can be quite an in your face kind of guy at times especially when it comes to my family and friends.  I have always been known as the one to ask when you want the brutal truth lol.

We have managed it so far Naga and he knows I care and knows he can expect me questioning him after he has a seizure.  Maybe I need to wait a few days before I do it next time but that always scares me that something will be missed.  One of the things with epilepsy medication is it causes the user to forget many things that just happened in a day or two...case in point, I asked him late last night what he did Saturday night...the seizure happened on Sunday and he couldn't remember what he did the night before.  It's just very frustrating and something I need to work on apparently.

Thanks for your reply Naga!

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2 hours ago, Dave 27 said:

Hi Harley,sorry to hear of your son's epilepsy.I'm epileptic but have been siezure free for a long time now(with meds of course).As for your son's attitude do you think it could be that he is embarrassed and simply doesn't want to talk about it.I know I was as it happened twice in front of family members and when I recovered and realised what they had seen I certainly didn't want to discuss it.Perhaps if you adopt a more softly,softly approach.Just let him know you are there to support him and that's about all you can do.I'm sure if he wants to talk about it you'll be the first one he'll turn to.

Hi Dave, I think you are right and a softer approach is needed by myself and his loved ones.  We all tend to be a little more hard on the subject with him than we probably need to be.  I will talk to everyone and get them to agree to try a softer approach and see how it works.  Thanks for the advice Dave, much appreciated!!

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11 minutes ago, HarleyFatboy said:

Thank you Naga, I will always continue to ask him about things that might have led up to his seizures such as proper rest, diet, and medications taken.  He knows this simply because I have been doing it ever since he was diagnosed with Epilepsy at the age of 9...he is now 34.  I guess I just need to work on my approach because as all of you know, I can be quite an in your face kind of guy at times especially when it comes to my family and friends.  I have always been known as the one to ask when you want the brutal truth lol.

We have managed it so far Naga and he knows I care and knows he can expect me questioning him after he has a seizure.  Maybe I need to wait a few days before I do it next time but that always scares me that something will be missed.  One of the things with epilepsy medication is it causes the user to forget many things that just happened in a day or two...case in point, I asked him late last night what he did Saturday night...the seizure happened on Sunday and he couldn't remember what he did the night before.  It's just very frustrating and something I need to work on apparently.

Thanks for your reply Naga!

Really...I can't say I've noticed 😉

Joking apart though, I'm sure he's well aware that you care a shitload...It seemed like a good point Dave made, that embarrassment might be the issue...Anyway, I hope that was the worst seizure he has, and things run more smoothly for you all 👍

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1 minute ago, nagachilli2 said:

Really...I can't say I've noticed 😉

Joking apart though, I'm sure he's well aware that you care a shitload...It seemed like a good point Dave made, that embarrassment might be the issue...Anyway, I hope that was the worst seizure he has, and things run more smoothly for you all 👍

LOL...yeah, i'm that guy!  Yes, he knows we all care and the embarrassment part is probably the issue.  We've talked about that part of it before but never really got down to the bottom of it.  A new approach is needed and the softer approach Dave mentioned is worth trying for sure.  Thanks for the support!!

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Just now, HarleyFatboy said:

LOL...yeah, i'm that guy!  Yes, he knows we all care and the embarrassment part is probably the issue.  We've talked about that part of it before but never really got down to the bottom of it.  A new approach is needed and the softer approach Dave mentioned is worth trying for sure.  Thanks for the support!!

No problem...and good luck! 

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