A last update on my son before the world as we know it ends.

MontereyLion

Well-Known Member
May 29, 2001
19,976
3,272
1
About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.
 
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Player2BNamedL8r

Well-Known Member
Jan 3, 2012
8,840
8,126
1
RI
I always knew I liked the Banana Slugs for some reason….now I know why! Congrats to your son (and your whole family who helped him to this huge milestone)…the sort of success story we all need to hear these days.
 

Midnighter2

Well-Known Member
Jan 21, 2021
2,836
4,681
1
About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.

F*ck yeah. My former boss was a Banana Slug/Princeton Tiger - he’s on a great track. Keep doing what you’re doing - it’s working.
 

Lion84

Well-Known Member
Apr 10, 2015
3,755
4,931
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Perspective is a wonderful thing for people (including myself) to be reminded of once in a while when we complain about the outcome of a football game - best wishes to you and the family, I can’t imagine the struggles and worry you have gone through.
 

northwoods

Well-Known Member
Jun 25, 2001
7,531
1,734
1
Perspective is a wonderful thing for people (including myself) to be reminded of once in a while when we complain about the outcome of a football game - best wishes to you and the family, I can’t imagine the struggles and worry you have gone through.
I was about to post essentially the same thought. Thank you.
 

tjp013

Well-Known Member
Gold Member
Aug 19, 2005
1,851
1,240
1
About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.
i'll keep him in prayers-God Bless
 

ouirpsu

Well-Known Member
Jan 24, 2018
1,745
1,736
1
North Carolina
About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.
Your post is making me ball it as I type this because I can totally relate. My son, who turned 25 on Saturday, also has a seizure disorder that medication has definitely helped, but not as much as we had hoped. He has had maybe 10 Grand Mal seizures in his life, 3 of which required an abulance and trip to the ER. He also has Autism, which makes things that much more complicated.

Anyway, he had a Vagus Nerve Stimulator (VNS) surgically implanted in 2019 and it has helped him tremendously. A VNS is like a pacemaker that is implanted into the chest and has wires attached to the Vagus nerve that runs up along the neck into the brain. The idea is for the device to monitor his heart and trigger an electrical pulse when it detects a seizure (apparently, there is a direct relationship between heart rate and seizures) that either stops the seizure or reduces its severity. Ideally, the device is supposed to learn and fire off BEFORE a seizure actually happens. He has partial complex seizures that thankfully respond to this charge, but not all seizures will.

His neurologist put him into the hospital prior to implantation of the VNS to see if he might be a candidate for surgery. In order to do this, they had to take him completely off all has meds and monitor his brain. On day 3 he had the worst seizure ever that took a team of 4 nurses to stop through some medication (I can’t remember what it was) that was put into his IV. His doctor immediately put him back on his meds, stopped the observation, and said she had enough data to show he wasn’t a candidate for surgery. It was scary as f, but it also showed us that his meds were definitely helping because the doctor said that if he wasn’t on them, he’d almost certainly not be alive right now.
 
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tlbakernc

Well-Known Member
Sep 10, 2019
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Mooresville NC
Sounds like an amazing young man!!! You must be so proud. Let me also say; “you must be one hell of a father”! Well done, all of you. Your post just made my day. Thank you for sharing. God bless you all.
 
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The Spin Meister

Well-Known Member
Nov 27, 2012
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An altered state
Your post is making me ball it as I type this because I can totally relate. My son, who turned 25 on Saturday, also has a seizure disorder that medication has definitely helped, but not as much as we had hoped. He has had maybe 10 Grand Mal seizures in his life, 3 of which required an abulance and trip to the ER. He also has Autism, which makes things that much more complicated.

Anyway, he had a Vagus Nerve Stimulator (VNS) surgically implanted in 2019 and it has helped him tremendously. A VNS is like a pacemaker that is implanted into the chest and has wires attached to the Vagus nerve that runs up along the neck into the brain. The idea is for the device to monitor his heart and trigger an electrical pulse when it detects a seizure (apparently, there is a direct relationship between heart rate and seizures) that either stops the seizure or reduces its severity. Ideally, the device is supposed to actually learn and fire off BEFORE a seizure actually happens. He has partial complex seizures that thankfully respond to this charge, but not all seizures will.

His neurologist put him into the hospital prior to implantation of the VNS to see if he might be a candidate for surgery. In order to do this, they had to take him completely off all has meds and monitor his brain. On day 3 he had the worst seizure ever that took a team of 4 nurses to stop through some medication (I can’t remember what it was) that was put into his IV. His doctor immediately put him back on his meds, stopped the observation, and said she had enough data to show he wasn’t a candidate for surgery. It was scary as f, but it also showed us that his meds were definitely helping because the doctor said that if he wasn’t on them, he’d almost certainly not be alive right now.
First I have heard of a VNS. Glad you saw significant improvement. Thanks for sharing such a difficult thread. And hope that he and science continue to improve.
 

LafayetteBear

Well-Known Member
Dec 1, 2009
46,962
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Anyway, he had a Vagus Nerve Stimulator (VNS) surgically implanted in 2019 and it has helped him tremendously.

His doctor immediately put him back on his meds, stopped the observation, and said she had enough data to show he wasn’t a candidate for surgery. It was scary as f, but it also showed us that his meds were definitely helping because the doctor said that if he wasn’t on them, he’d almost certainly not be alive right now.
ouir: The above two portions of your post have me confused. He DID in fact have surgery to implant the VNS, so was there some OTHER form of surgery he might have had but did not?
 

ouirpsu

Well-Known Member
Jan 24, 2018
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North Carolina
ouir: The above two portions of your post have me confused. He DID in fact have surgery to implant the VNS, so was there some OTHER form of surgery he might have had but did not?
Yes. Before he had the VNS implanted, his neurologist wanted to see if he might be a candidate for brain surgery, which would likely mean he wouldn’t need the VNS. In order to determine this, he had to go totally off his meds while hooked up to all kinds of monitors in the hospital. That’s when he had the worst seizure I’ve ever witnessed, and what prompted the doctor to conclude that his meds were basically keeping him alive. It turned out he’s not a candidate for surgery due to the type of seizures he has (partial complex) and has had the VNS for a little over two years. He’s still on meds, but his seizures are much less frequent and less intense than before the VNS.
 

mfwerner

Well-Known Member
Gold Member
Dec 30, 2008
91
117
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About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.
After reading your story I sit here in my office simply amazed. Your son is an amazing person....and amazing children are only given to amazing parents. God bless you and your family....
 

demlion

Well-Known Member
Feb 4, 2004
44,707
12,832
1
About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.
Wow. A tribute to those who raised him, brother.
 
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McCloudersportLion

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Sep 5, 2019
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Thanks for the reminder of what this board could be.

Why do you smoke medicinal brown box Marlboro's? Did it make ya feel better when Keith Van Exel pulled up and ended ya down low late 70s Hoosier Knight fever? Throw a chair abaht it, Boomer.
 

johnmpsu

Well-Known Member
Nov 29, 2001
4,151
1,493
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EagleVail, CO
About 6-7 years ago I posted the trials and tribulation of my adult son who has epilepsy. At the time he was having a Grad Mal about every 2 weeks. He went to Stanford Medical Hospital and after extensive testing, he was approved for brain surgery. The surgery was successful but not completely. He still has auras everday and seizures about once a month, give or take. Not Grad Mals, where he loses consciousness but less severe seizures. However, at the beginning of August he did have a Grad Mal. I've seen probably 70-80 of his Grand Mals, this one was the worst I have ever seen. I was so concerned I called 911. That was only the second time I called 911 for his seizures. The first time being the first one that happened in our garage, 12 years ago. The good news, no the great news is he is now a Senior going to UC Santa Cruz. Yes the Banana Slugs UC Santa Cruz. He will hopefully graduate with a degree in Psychology, next Summer. College has been a real struggle for him. The seizures, the medications and the operation have caused real memory problems for him. I wish I had put half as much of the effort he has put into college. He ALWAYS seeks out extra credit to help counter his deficiency. Anyway, I wanted to update the board on his progress before the board disappears. He is doing better but with some issues. The seizures are still happening but the Grand Mals are much reduced(but not all gone). He went to a Jr College in Monterey for 2 plus years, then a year to the State University at Monterey Bay and now US Santa Cruz. We couldn't be more proud of how he has picked himself up from his boot straps to get a College education.. At one point in this journey he was suicidal and entered a hospital, for a 72 hours watch. Those were the really bad days. I want to thank all the boards here on BWI for being here thru all these years. For so many of us who have needed a shoulder to cry on, a piece of advice, help with our crazy computers or just some stress release after a bad game (6-4 and the Minnesota game in 99, come to mind) etc. etc. etc.
I will see you all on the other side where hopefully we will be carving out a future nearly as great as these boards have been.
MontereyLion.
Congratulations to your son and to you. I can relate to everything you wrote although my daughter's problems started at birth with a severe brain bleed. She has virtually no short term memory and serious executive issues. Lots of anxiety and psychological problems on top of that. A high school teacher called her the hardest working student she had ever met. She went to PSU and in spite of a terrible experience early in her time there graduated with a 3.51 and is successful in her career. The work ethic your son learned and was forced to adopt will serve him well in the real world. Congrats to both of you.