Seizures

[Conquest102]

My 18 years old son had a Grand mal seizure saturday night. He has never had one before. We called 911 he got tranported to ER spent 7 hours at hospital tested everything they could think of all were negative for a cause. His biological mother does have seizures we are thinking it is genetic. Have a follow up EEG and a visit to a neurologist in a couple of weeks. Being a former EMT this still FREAKED me out there were no warning signs he just fell down and started seizing it was classic text book stiff then shaking, eyes rolled up. Dad was right next to him the whole time keeping rolled on his side. He said the only thing he remembers was being in the ambulance. This was 20 minutes after it started.

The doctor at ER said we have to keep a close monitor on him for the next 6 months no driving which he doesn't do anyway and a whole list of other things he either can't do at all or has to have total supervision IE swimming. Wandering how this will effect his time at the campgrounds. He loves to wander around and be the little social bug he is VERY out going has no trouble making new friends.

 

[braindead]

I'd think until it's under control supervision would be required.  Imagine if you are out fishing and he wanders up, you strike up a pleasant conversation and bam the nice young man you were just talking to starts having seizures.  Would you rely on some random person having a phone (that has service), calling 911 and knowing how to handle a seizure?  I wouldn't. 

We had a guy at work that would have occasional seizures, we had several people prepared and a plan in place for dealing with it.

 

[Frizlefrak]

Ideopathic seizure disorder (ie..."epilepsy) can be inherited, but it's odd that it never manifested itself in childhood.  Has he been under any unusual stress lately?  New prescription meds?  Maybe a severe allergic reaction to some kind of food or drink (ie....energy or sports drinks)? 

Very scary to have this happen to a loved one.  I had a buddy in high school with Epilepsy...led a pretty normal life, but couldn't drive or do some of the things the rest of us did.  Let us know what the Neurologist says. 

 

[Conquest102]

No never while a child he is a heart patient had surgery when he was 29 days old. He see cardio doc every year everything has always checked fine.
No med changes in about 2 years.
No new stress he is homeschooled and we don't push him to hard on his studies do to his mental ability with Aspergers and developmental delays.
Foods he is very much a creature of habit as far as what he eats doesn't like changes which in this case may be for the best.
Thats the part that makes this really hard to grasp why now.

 

[jmugs]

We have a friend who's child has seizures. She is not able to play video games and not able to watch much TV (or computer) as these things set off her seizures.

Not knowing much about the subject, I have no idea if this has a thing to do with your son's situation.

 

[Frizlefrak]

How about environmental factors?  Exposure to cleaning chemicals, recent visit from exterminator, anything that changed recently?  Maybe even something as seeminly innocent as a different laundry detergent could set off an extreme allergic reaction resulting in a seizure.  Maybe his neurologist can pin it down to something environmental that can be eliminated from the equation in the future.

 

[Conquest102]

How about environmental factors?  Exposure to cleaning chemicals, recent visit from exterminator, anything that changed recently?  Maybe even something as seeminly innocent as a different laundry detergent could set off an extreme allergic reaction resulting in a seizure.  Maybe his neurologist can pin it down to something environmental that can be eliminated from the equation in the future.

That's the part that is hard to grasp nothing has changed. We make our own laundry soap and have done this for about 5 years. All the blood work came back normal they tested for any infections. The mri showed no abnormalities so no tumors. With Aspergers he is VERY set in his ways not prone to changes at all. That is where we are leaning toward something gentic from his biological mother. Which is still very odd that it hasn't happened sooner about 4 years ago he had a stent placed and it caused him a LOT of stress worrying about having it done. Which went perfect by the way. He had a follow up catherization done last year to measure the pressure on both sides of the stent  and pressures were the same. We go to see his regular DR on Thursday will hopefully learn something. The ER intern neurologist seemed to just want to put him on meds even though we hadn't even done any tests at that point. We of course said NO to just throwing meds at it and see what happens. So far he has not had any more.

 

[falconhunter]

Same thing happened to our son. He was 18 when he had his first seizure and he is now 36 and has them under control with medication. We couldn't figure out where it came from then several years later my mother in law had one at age 70 and had to control them until her death a few years ago. We figured he inherited it from her but still don't know. It's terrible to see your child go through this kind of thing.

 

[bucks2]

I'd bet you already have a medic alert type bracelet/necklace for him with your phone number on it, but if not, now is an excellent time to get one.

Understanding exactly why people start and stop having siezures has puzzled medical science for a long time. You may go thru all the tests and find nothing and he may never have another siezure. Or he may develop a pattern and need regular treatment and medication. Only time and continued monitoring will tell.

Either way he's still your son and he's lucky to have your love and care. Let us know how things work out.

Ken

 

[captsteve1]

I understand that there are no new stressors in his life, but how close do you monitor his sleeping habits?If he is laying awake at night and somehow is being sleep deprived, that can be a major trigger.

Just throwing ideas out there.

Steve

 

[Conquest102]

Capt ; Intresting idea I will start doing a closer monitor of his sleeping. He does take melatonin to help him sleep.

Bucks2 Have not got ID yet actually had even crossed my mind yet Will be ordering one ASAP though.

 

[John From Detroit]

Wife used to have that problem and I've been tested for it... As a result of my personality (I happen to like doing research) and the fact I've been tested.... I did some serious study, but nothing I'd be comfortable passing on what, nearly half a century later.  Other than for one bit of advice.. Which you are likely following already... LEARN ABOUT IT. All you can, and from good sources not "Someone who knows about those things" but Doctors, Nurses and the like who actually DO know.

Oh, my tests were normal I might add.. or rather as normal as I get (But in this respect normal).  Wife also grew up and is no longer subject to seizures.  Though one of her favorite threats used to be "Do you want me to have a seizure"... Like I said,, I had studied the problem... Threat did not work.

 

[Conquest102]

Wife used to have that problem and I've been tested for it... As a result of my personality (I happen to like doing research) and the fact I've been tested.... I did some serious study, but nothing I'd be comfortable passing on what, nearly half a century later.  Other than for one bit of advice.. Which you are likely following already... LEARN ABOUT IT. All you can, and from good sources not "Someone who knows about those things" but Doctors, Nurses and the like who actually DO know.

Oh, my tests were normal I might add.. or rather as normal as I get (But in this respect normal).  Wife also grew up and is no longer subject to seizures.  Though one of her favorite threats used to be "Do you want me to have a seizure"... Like I said,, I had studied the problem... Threat did not work.

The ER intern neurologist seemed to just want to put him on meds even though we hadn't even done any tests at that point. We of course said NO to just throwing meds at it and see what happens. ???

So I take ALL information from where ever with a grain of salt. They call it PRACTICING MEDICINE for a reason I don't like being the guinne pig though. ;D

 

[Wavery]

I am "epileptic". It's important to understand that term. It basically refers to a person that has seizures (more than one seizure) for no determinable cause.

Seizures do not always equate to epilepsy. Although it can be nearly impossible to have an absolute determination on what caused a single seizure, it is important to try. The more dangerous causes are brain tumors etc. However, the types of seizures that have dramatic causes such as a tumor, usually create multiple seizures that get worse over time if not treated. The upside is that once treated, there are sometimes no more seizures (not always though).

For the patient, epilepsy can be one of the more difficult things to (mentally) deal with because it has no correctable cause but must be controlled by medication although the patient "Feels" fine.

My 1st seizure was at 23 and was a severe grand maul that tore ligaments in my back and I bit my tongue almost all the way off so there was a LOT of blood. I was married with 2 small children so it was really scary for my wife to witness. (I didn't witness it, so it was no big deal for me).. The examinations that they had back in those days were rather barbaric but thorough. They ruled out tumors etc and told me that if I had another seizure that I would have to be put on medication.

Sure enough, 6-months later another seizure but not nearly as bad. I went through all the tests again and no cause was found. I was put on medication and stayed on the meds for several years. When I was about 35, I asked the Dr if I could go off of the meds because they made me constantly sleepy. He recommended not trying it but I insisted that I felt the seizures were a fluke..... He helped me back off the medication over a years time. After about 4 years, I had another (petty-maul) seizure and I have been on meds ever since and seizure free.

The reason that I recount this story is to help you understand that seizures are not all that uncommon. They may alter one's life (if there are more than one) but it is a condition that can be lived with. It does not have to detour a person from doing anything they want. I sailed around the world on my own sailboat for 14 years. Sometimes it was difficult to get my meds in some countries but it certainly did not change what I was able to do.

I am now in my late 60's and have taken seizure meds for nearly 40 years. I hope that it doesn't come to that for your son but if it does..... it's a **** of a lot better than the alternative. Over the years, brain-scans, cat-scans, MRIs.... all that stuff have improved tremendously. I was recently tested again to be sure that there wasn't a buggy-man hiding in my brain. They were able to manifest the seizures (without me actually having one) and determined that my med level was appropriate and that they still didn't know why my brain has the proclivity to "Short circuit".

I hope that your son does not experience any more seizure activity and they may even be able to tell if he will now (without him actually having one). If he does, it really isn't a big deal to be on the meds and they really do control seizure activity in most patients. I have been on Phenobarbital all this time. They don't use that drug for seizure control any longer because it makes most patients lethargic. However, they have more modern meds with fewer side-effects and just as affective, if it comes to that.

BTW..... my 1st seizure came with no waring...... I was an extremely healthy, active young man. Already Service Manager of a Large Chevy Dealership (After graduating General Motors Institute) and I was also starting a promising career as a pro-race car driver. The seizures kept me out of professional racing but I never did lose my driving privileges.

another BTW..... the fact that your son may have a sleep disorder could be HUGE..... I am a bit surprised that the Dr did not ask or explore that in depth. There are specific tests that deal with that exact issue.

Not putting him on seizure control meds may be a big mistake. They can still run tests with him on the meds. Having another seizure could have dire consequences. Sometimes, the person just falls to the floor with no warning. Drop a bowling ball from 5'...... that is the sound of an unconscious persons hitting the ground while falling from a standing position.

 

[Conquest102]

THANK YOU Wavery I think you hit the nail on the head on several points. We have at least so far ruled out the super bad stuff like tumors. Like you said now the harder part IF we can find a trigger and prevent future ones from happening. So far it has not brought him down emotionaly we are trying to make sure not to have to many discussions in front of him for that reason. We have sat the other kids down and tried to explain to them what happened and what to do if he has another one. At this point I think the worse part is the waiting for the EEG and DR visits to figure out the next step. Then being super alert that he doesn't crash again like Sat. His poor eye looks like he got in a fight with a piano(thats what he crashed into Sat) and LOST.  Again Thank You for the info and sharing.

 

[Wavery]

THANK YOU Wavery I think you hit the nail on the head on several points. We have at least so far ruled out the super bad stuff like tumors. Like you said now the harder part IF we can find a trigger and prevent future ones from happening. So far it has not brought him down emotionaly we are trying to make sure not to have to many discussions in front of him for that reason. We have sat the other kids down and tried to explain to them what happened and what to do if he has another one. At this point I think the worse part is the waiting for the EEG and DR visits to figure out the next step. Then being super alert that he doesn't crash again like Sat. His poor eye looks like he got in a fight with a piano(thats what he crashed into Sat) and LOST.  Again Thank You for the info and sharing.

Preventing future seizures from happening is often much harder than one might think. Something caused the brain to "Short circuit". That's no small thing and it is likely that if it happened once, it could happen again. Properly functioning brains don't often just short circuit for no reason.

Having said that, if they can positively ID an allergy, toxin or other outside source that caused the brain to short circuit, it may be able to be eliminated and controlled. I would certainly make sure that the DR knows about the melatonin and ask his advise how to back off of that. I would not just suddenly stop it. Any sudden changes in brain chemistry (food and medicine intake) might want to be avoided. If you stop anything, do it very slowly by reducing dosage and be sure that you record everything and give it to the Dr IN WRITING.

 

[Conquest102]

I would certainly make sure that the DR knows about the melatonin and ask his advise how to back off of that.

It was actually a Dr recommendation to help him relax at night. And is on his med list in the computer at hospital. He's been taking it for about 2 years.

 

[Gary RV_Wizard]

Excellent advice from Wavery. I too am an epileptic and my seizures didn't start until I was 20. The docs think it was probably caused by a head injury at age 14, but it has never been possible to be certain of that.  My point here is that seizures don't necessarily start right away, whether genetic or inflicted by something else.

Epilepsy - or other seizure-inducing issues - need not be a disaster to a young persons life. It's a medical condition and has to be dealt with, but it's not a cause for despair.

 

[Wavery]

One other small piece of advice.

When someone is seizing...... get stuff out of the way, lay the person on the floor.... DO NOT put anything in their mouth (just be sure that their airway is clear..... DO NOT try to restrain or carry the person. If the seizure is not violent, you may be able to gently roll the person on his/her side. Be very careful doing that. It the person gets violent, you can get hurt. Some people have super human strength during a seizure. The brain has a mechanism that causes us to not strain our muscles (a limit switch if you will). That doesn't work when the brain seizes.

I saw someone have a broken back while people were trying to carry him out of Church during a seizure. I begged them to put him down and they ignored me.

My back injuries were caused by paramedics trying to restrain me. That was in the early 70's they are now trained not to do that.

Don't dial 911 unless the seizure lasts for over a certain amount of time (5 minutes I think... you'll have to ask your Dr) or if the person had a serious injury from a fall. Serious head injuries are common and can be fatal. I'm not trying to scare you but your comments about medication are a reason for concern.

 

[Wendy]

Not quite the same as your son, but our dog has idiopathic epilepsy (ok, he is our son). We do what Wavery said when he has a seizure, scoot him away from furniture and sit with him until the seizure is over. He's been tested for everything that could cause the epilepsy and everything was ok, hence the "idiopathic" diagnosis. We have Valium for him if the seizure lasts too long or if he has cluster seizures. Funny thing is that once the seizure is over, he looks like he has no idea that there was anything wrong.

Take care of your son and do what your doctors say to do.
Wendy