New Member

[Hadley]

Hello all!! I am new to this, but unfortunately, not new to epilepsy. I personally do not have it, but my 12 year old son does. It has been really hard on not only him, but on me and on his sister. We are dealing day by day, as this is the only way to handle it. He has been seizure free for 6 years and off the meds for 4 years, when, in January, he started having nocturnal seizures. He has one a night, sometimes two. We just finished a 4 day study to see if we could figure out what is going on. We are scheduled for an MRI at the end of the month. I am hopeful that his neu will figure out something. Thanks!

 

[ashmstng]

:shake:
Welcome to the CWE board. I hope you find all of hte info that you need and met the nicest people that I have met. It is helpful on here, to me anyways. They welcome you with open arms. I hope the best for your son. Take care. :hello:

 

[Bernard]

Hi Hadley, welcome to the forum. :hello:

Sorry to hear that your boy started having seizures again. It's always tough when you think you've finally got things under control and then learn it was an illusion.

Make yourself at home here.

 

[paradise survivor]

Hey welcome aboard! You have come to the right place for sooo many reasons. You will gain an incredable insight not just medical info but more importantly the 'insider' view of those of us that have the big E. Although I must admit sometimes it is harder on those around us to watch and feel powerless...myself, heck I'm unconcious and don't know beans till I come to...Remember the importance of 'a soft landing'. Had a big event on Monday and 'woke' to my dogs 'crying' in front of me. Gotta love 'em, they never left my side.

 

[Hadley]

What a way to look at it...an illusion. Strange but very befitting! Fortunately he has only had one grand mal and it was about 3 weeks ago. Lasted for about 15 minutes. First time he has ever done that to me and I have NEVER been that scared in my entire life. Paradise, believe it or not I understand what you are saying. My son has no idea why I act like I do about certain things. His doctor doesn't want him riding his bike or skateboard or anything like that for right now and son just thinks we are being mean. Well, I finally recorded him having one of his seizures the other night just so he could see what he was doing. I think he finally understands now. I am really looking forward to reading this forum from people who actually understand what he is going thru. I can only look in and feel helpless. Thank you all for the welcome!!!

 

[paradise survivor]

Hey Hadley, I gotta tell you that for the first couple of years (diagnosed at 37) my daughter was the one that 'took' care of me. My husband (God love him) would panic. Now that we have had years to practice and my daughter has left the nest to marry and make her own, he has gotten pretty good at it. He puts me to bed with the phone near by and my two dogs get on either side of me and stick like glue. He stays with me or checks on me depending where I am in the seizure. But I must say there is little that I don't do because of E! I do use some common sense like not swimming alone but I have also gone horseback riding. Granted that didin't exactly work out the way I had hoped but the horse was very understanding even if the people around me were not. NOTE TO OTHERS: Having a seizure while riding a horse is not recommended. Still I had a good time and it definately made for a good story...of course I have quite a few of those. Don't let E rule the day or the life:woot:

 

[Hadley]

I am working on that one... It is just hard for him to understand that these things (like not riding his bike) are not forever, just until we understand what is going on in his brain a little better. We are looking at, hopefully, knowing something by May 9th. At least that is what I am praying for. My daughter who is 10, is the one who actually watches him when I am not around. God love my husband, but her REALLY panics. I usually do pretty good, except when he has ones that last over 10 minutes!!!

AMEN to not letting it rule the day...I always tell Jamesson that epilepsy is not what makes up who you are, it is something that happens to you. He doesn't understand that one yet, but hopefully one day he will.

 

[paradise survivor]

Hadley- Is it possible to find a copromise on the bike? Maybe if the bike ride is with you or some other semi controlled enviroment, I mean as long as the helmet is on...even kids without E fall off bikes. Just a thought. I am sure I will get a scolding from others for the recommendation but it just seems a waste of a beautiful day to wait for fear of something happening. I am reminded of telling my own kids when they were growing up, can't never did anything. Now I have to remind myself sometimes. When I was first diagnosed they told me I should have someone with me at all times including when showering. That was more demoralizing than anything and I found myself acting like an invalid waiting to for the next 'shoe to drop'. Too much!! There is 24 hours in the day- pick a few to enjoy:soap:

 

[Hadley]

I will most definately keep that in mind. You are right, I understand that, but going by what the doctor said, no bike riding until after the MRI. THAT I think, or at least hope, he can deal with. We do alot of other outdoor activities. We toss around a football, baseball, plant flowers, take walks, even go on nature hikes, so it isn't like he is stuck inside to do nothing. If he will just be patient for another 14 days. I am really enjoying the input from those who do have E. I only understand it from my perspective, I do not, however, understand from yours. Thank you for taking the time to try to help me understand.

 

[paradise survivor]

Hadley, Please forgive me, I know I sound a bit contrary, it comes from years of practice. I am just a little curious what the doctor means by waiting for the mri? Sometimes doctors say things so that they are 'covered'. The mri only shows what is currently there and even that can change as in my case. Initially my doc 'suggested' that my events were not true seizures. As the years and tests go by he finds all kinds of things and writes another rx I won't take. What I am trying to say is E changes for many people. Many things influence the severity as well as frequency. Watch for the clues. They are there, we have to learn what they are. I am not a doctor just a patient.Hang in there this too shall pass...onder:

 

[RobinN]

I can understand the worry, especially to know that it might not be an anurism or TIA.
My daughter is a competitive ice skater, and I kept her off the ice until I have a clearer picture of what was going on. After we knew that it was
NOT life threatening, she returned to her passion, and even does double jumps, and often falls. Her older brother asked me not to keep her in a bubble.

Look into diet, look into imbalances in a vitamin or mineral, look into digestive issues. These are things that even the doctors are overlooking or not even knowledgeable about.

My daughter is off meds, is on a strict elimination diet, takes a handful of vitamins and minerals, and is doing neurofeedback.
She reduced her seizures from 6 down to a very mild one this month. I am overjoyed.

Keep records of everything and then a picture might begin to develop so that you have a clue as to why his threshold is so low. I learned that we are all this l<---------------------->l close to having a seizure. Some just go over the edge due to certain triggers, so we need to learn what those are and raise the threshold.


Oh.. BTW welcome to CWE. So glad that you joined us.

 

[paradise survivor]

Thanks Robin!! A little perspective! Sometimes I am short sighted so I thank you for the snap back to reality! It could be other things and I let my own experience color my offering. Bad Bad Bad. Can someone help me get my foot out of my mouth.....

 

[BuckeyeFan]

:cheers:

Welcome to our house. Have a seat while I get the coffee. I see you have met some others already. I hope you are able to stop by and visit often. It is pretty comfortable here.

One thing you might here from others as well is that your son is at an age where puberty might be impacting his E. I didn't realize how much impact that could have before I came here. My E started 26+ years ago at the age of 20, so I was well past that stage.

Well, I finally recorded him having one of his seizures the other night just so he could see what he was doing.

I have contemplated having my wife tape me having a seizure at different times, but I don't know if I could actually watch it. I was an EMT for 20 years and witnessed plenty of seizures. However, I hate the loss of control with a seizure and am not sure that I would want to see myself.

It is a good diagnostic tool for the neurologist.

I see that your son is into BB. At 46, I still love to play, though my skills are long gone. Maybe he can play BB more right now. That would be pretty safe.

:cheers:

 

[paradise survivor]

I too was told to take video- I would say yes for the doc to see, but I can barely stand a still photo much less a real action movie. Seeing myself in full event, no thank you

 

[BuckeyeFan]

NOTE TO OTHERS: Having a seizure while riding a horse is not recommended. :woot:

Canoeing is not the best timing either. That is why my wife is my HERO. I wouldn't be here today if she hadn't saved me. Still don't know how she did it. I am twice her size.

:e:

 

[RobinN]

:cheers:

I have contemplated having my wife tape me having a seizure at different times, but I don't know if I could actually watch it. I was an EMT for 20 years and witnessed plenty of seizures. However, I hate the loss of control with a seizure and am not sure that I would want to see myself.

It is a good diagnostic tool for the neurologist.

:cheers:

I read in a book, I think Epilepsy: a new approach where someone was shown his seizure
in progress, and from then on something clicked and he said he was not going to allow that to happen any more. So with redirecting his thoughts he became seizure free.

Those that have read this book, is this explained right? There are tools and suggestions in the book as to how to do this.

As for being 20 and past puberty... I think not. Your brain hasn't stopped growing even at that age. So I would think that your hormones are still working themselves out too.... or raging. Some start as early as 9 (our pediatrician had a 5 yr old) and I would think some start later. Give yourself enough triggers at that time and POOF you have gone over the seizure threshold.

 

[Bernard]

... I usually do pretty good, except when he has ones that last over 10 minutes!!!

It wasn't clear from your post, but I hope that you are seeking emergency medical attention if a seizure lasts more than five minutes. FYI - status epilepticus

 

[Hadley]

We called an ambulance on the only one he has had that long. Since then, the neuro gave us some meds that go up his nose in the even of another long one. That is the first time he has ever done that to me, and I hope and pray that it doesn't happen again. Usually they last only about 30-45 seconds, which doesn't cause me to panic near as much. What does bother me, though, is that he screams "help me" like he knows what is going on and like he is in pain. He doesn't have a clue when it is over what has happened, but that is the hardest, most helpless feeling to watch him have one and scream help me when there is nothing I can do. Is that normal? or has anyone ever been told that they scream out things like that????

 

[Bernard]

Stacy has never voiced a coherent word when starting to seize, but she often vocalizes something that appears to me to be a cry for help or an "oh no" realization that a seizure is oncoming.

 

[RobinN]

My daughter has never made sounds. There might be some gurgling sounds due to lack of air.