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tiger mom

First time seizure

My 12 year old son experienced a seizure for the fist time recently. I had witnessed his father having a seizure years ago so I'm pretty familiar with what they look like. It was a frightening experience to witness my son going through this. I felt helpless to him. The only thing I could do was make sure he was safe. During the seizure I was frantic, hysterical and above all a nervous wreck. Though his father has Epilepsy I know it's not hereditary but can be more common in children with parents who do. What I need to know is how can I be more relaxed and helpful to my son should he experience another?

Comments

Re: First time seizure

I am new to this (my son was just diagnosed a few weeks ago). Our situation is different than yours (I think) because he has multiple seizures that last less than 45 seconds. He spent 11 days in the hospital.

The first time I saw a seizure was three weeks ago. At the time, I didn't even know that is what it was. He had a couple a day for several days, then BAM - the 4th day, he had 35. The next day, I lost count at 60 and that was by 3pm that afternoon! When all is said and done, in that week that followed - he had well over 200 seizures.

For me...it seemed to get a (little) easier, the more he had. It's still the scariest thing ever, and the only way I got through this time was to pray.

I literally sat with him in the hospital three days, two nights, and just PRAYED. I don't know your background, or whether this is an option for you...but if it helps, I just prayed that God would give me strength to be there for my son.

Looking back on it several weeks later - there is no way that I can explain the fact that I was able to talk him through the seizures - sometimes 20 overnight - and time them, write them in a log, and not completely fall apart - except for my faith.

If this is not something you are comfortable with - then my next best guess would be (hard though it is)...talk him through it. Tell him he will be ok, that you are there, and you love him. If you are focused on talking him through, you won't have time to fall apart. The other thing is, as you are telling him it's going to be alright, you are telling yourself too. :-)

Hope this helps...hang in there...

Re: Re: First time seizure

Thank you for the reply I will keep what you said in mind should my son have another.

I have spent the last few days researching the different types of seizures and upon this I have come to the assumption that my son had what is called a "tonic-clonic" seizure. I'm not sure if you are familiar with the different types but the one he had can last 1-3 minutes. The seizure itself include mouth chewing movement, eyes can be an open blank stare or rolled back into head, skin may turn blue along with head twitches. I do not remember if his lower body was seizing, however it is not excluded. I guess,generally,children are not diagnosed with Epilepsy until 2-3 seizures present themselves.

I think our children may be experiencing different types of seizures.

Re: Re: Re: First time seizure

You are right...they are having different types. My son has complex-partial seizures, and they are tied to his right temporal lobe, which didn't develop properly. So the good news is, we know the cause...the not so good is, because it's a portion of his brain that didn't develop properly, we may be looking at surgery to remove that portion of brain. Jacob will never outgrow his seizures, and if he doesn't have surgery, he will be on anti-seizure medications for life.

We are meeting with an Epileptologist November 1, so we'll see. Right now it's just one day at a time. I spoke with our neuro yesterday and we are upping his dose of Trileptal, because he is continuing to have seizures. They don't look anything like they did when he was in the hospital; he is able to talk through them, it's just his hands (I think more like the simple partial seizures).

I can't imagine what it's like for you to watch him go through this. It was horrible for me - but Jacob's didn't last as long. He did have this look of fear on his face, and that is what what the hardest for me...he is only 4...as soon as I can figure out how, I will load a pic of him. Right now, our home computer is not exactly cooperating...