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kaolin

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Hello everyone. My son has epilepsy due to a stroke at birth. We've been struggling with some chronic issues and our neurologist has been less than helpful. He's tired all the time, he gets "feelings" and sometimes sees auras. I am frustrated and wish the doc didn't try to pacify me by saying it's normal and he'll grow out of it. ug.

We go to bed early and he gets plenty of sleep. Why is he always so tired? It's like he's a raw nerve by the time school gets out.

Anyway - hello and thanks for being here.
 
Hi and welcome. How old is your son? Epilepsy can make you tired even if you get enough sleep. The "feelings" he gets could be simple partial seizures, and he could be having subclinical seizures as well, even during the day. I have lots of those and they are very tiring. They can interfere with your sleep so that even if you seem to be getting enough it may not be very good sleep, and they can also mess up how you feel during the day. I don't know the particulars of your son's case, but it is a good thing that your neurologist is not trying to pacify you. You want a doctor who will be truthful with you. While you may be able to find ways to control the seizures (there are lots of options. Talk with the doc. Be assertive.) I would not count on him "growing out of it". In my case, I have probably had epilepsy for most of my life, even though it was only diagnosed officially 32 years ago. (I'm 55 now). We have never found an actual cause for the seizures.
In any case, it's not an easy thing to deal with, either for the person with epilepsy or the family. Sometimes I think it's harder on my wife than it is on me.
All that said, do your research and keep in touch with your neuro about treatment options. If you don't think he's listening to you, find someone else, but don't just search for someone who will tell you what you want to hear, 'cuz that won't help anyone. Keep in touch with us here. There is also a forum for parents, which might be a helpful place for you to visit. Best of luck to you!
 
Hi Arnie and thanks for the welcome.

My son is eight, and I should be more clear. His doctor IS trying to pacify me by saying he'll grow out of it. I called another location inquiring about *another* new doctor, gave the reasons for my complaint about the current one, and was told to stick with the I have.

It's really disruptive because he ends up going to the nurse's office to lay down at least once a day after he gets these, which indicates to me a need to address them. Since I'm *just* mom I have no idea how to do this. I can't imagine him dealing with this the rest of his life.

When he was 1 he had a lot of simple partial and simple complex, and then a couple "big ones" a few months later (atonic). Since then we've been pretty lucky. A few months ago, though, he had a breakthrough seizure and it scared the heck out of me. He collapsed again this time. When he was sent to a pediatric unit and had an video EEG there were no signs of seizure activity, but then it was explained to me that for an absolutely reliable reading the electrodes need to be on the brain. Thankfully his situation doesn't warrant that.

But I'm still left to wonder what to do and where to go for help....

Grace and peace.
 
Hey kaolin.

Welcome to the forum. Its a lovely place.

Being young and having epilepsy is very hard and disruptive to life during an important part of a child's life. I was 16 when diagnosed, but I'm doing well now. I was very tired and sleep a lot even now at the age of 27.

Seizures are exhausting no matter what type of seizures your son is having. Most medicines do not help with that issue. Yes, he can grow out of it, but I was told the same. I did not. I expect to have epilepsy for the rest of my life, but I live a pretty normal life. Just have to take medicine. I have had video EEGs and there were no signs of seizure activity on the EEG itself. This can be pretty normal

What is your son on if anything? With more info, I'm sure many people would be happy to help however they can.
 
thanks Sperlo.

He is on 900mg of Oxcarbazepine a day (generic Tripletal) and has been since he was a baby. We tried a few of the others, but this one works and has practically no side effects. He recently began Cyproheptadine to treat the auras, but the "feelings" are the ones he has most. Sometimes they are together, sometimes not.

Maybe the neurologist can't do anything to help the episodes he's having and so that's why he's saying he'll grow out of them - as if they're a passing thing that can't be isolated and therefore treated? I guess it's encouraging to hear that others have the same experiences as my son.

My son is awesome in a lot of ways, but one thing that strikes me as odd is that these feelings are really hard for him to describe - which makes it hard for me and his neurologist help him, of course. He holds his hand in front of his face and he looks spaced out when it happens. It's just strange.

again, thanks for the welcome.
 
I would expect as he gets older, if things don't change, he may try some medicine that could be quite a bit harder on him. It is possible that they, "just go away". Its a hopeful thought because he has time to grow and develop.

Across the board, you will find that almost all of us cannot properly describe an aura (simple partial seizure) because we can simply not use words to describe them. He may feel "dizzy" or "empty" or "upset". These are words we can use, but still do not properly describe what we feel.

Recently in my sleep, I was recorded doing sit-ups in bed. What this shows is that I commonly went back to raising my arms to the same spot and was totally spaced out. The EEG also showed me as awake with no seizure activity. Sometimes an aura or simple partial can appear like this. In your son's case, the hand in front of his face is probably part of this. You may start to recognize lip smacking or other repetitive motions that could be signs of a simple or complex partial seizure.

His epilepsy sounds pretty familiar to me. Maybe you and my wife should go bowling or something. :D
 
Hi again. The feelings are very hard to describe. I have several hundred simple partial seizures a year, am a well-educated, articulate man, and still have not found a really adequate way to describe how they feel. I think most of us here on the board would be in the same situation. This type of seizure has elements of "normal" experiences, (a coldness, a sort of adrenaline rush, a rising feeling, a breathlessness, a cold sweat, an unreal feeling, a twisting of reality, and on and on) but the combination is such that describing it is nearly impossible. I can't think of a good analogy for that, but it might be like trying to describe a color to someone. Does that make sense? Also, I imagine that our seizures probably feel a little different to all of us, but we know there are enough commonalities to understand how they feel. In the poetry area many of us have shared poems which attempt to describe the seizure experience, which might be helpful to you in trying to get an idea of what your son is feeling, and perhaps help him put those feelings into words, if that is important to him.
Well, I gotta get to work, but your son is not alone, and neither are you! We will help you as much as we can.
 
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