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I am new to all things seizure related. My five year old son was found face down in the sand at school in June. We didn't know what had happened. They couldn't wake him up for 8mins. The summer was fine so I figured he just fainted or something. Sept 21 I found him on the floor having a violent grand mal seizure, I couldn't believe what I was seeing, I still can't. It was scary! Oct 5th I heard him fall to the floor with another grand mal seizure, and nov 1st I heard him having a grand mal in his bed. So that is 3 in total sept 21-nov1. Plus the one in June. Is that considered a lot? What is wrong with him? I can't get an eeg until nov 26! Any thought would be appreciated.
 
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Welcome to C.W.E. first try to calm down a bit, you have had him at a doctor, as for your son there is nothing wrong with him, yes he may have epilepsy but an EEG is not a definite result to prove he has Epilepsy but it does help. Is it considered a lot, yes and no you see everybody is different but for you it is too many and that is natural. All you can do is watch him so he does not hurt himself and keep a record of when it happened, what it was like and how long also what he was doing at that time all this can be a help for your son. Do you know if he had a head injury of any kind or hit his head it is important you know this, any questions you have write them down according as you think of them and bring them with you because you will be so nervous you will come away saying why didn't I ask that. Its easy for me to say but try and calm down, your son will get looked after you will see to that and he is normal as normal as you or me.
 
Welcome to CWE!
Perhaps you have already done this, but as best you can trace back your family history (your son's grandparents, aunts, uncles and cousins) to see if they have had seizures or other neurological issues, syndromes of any kind or other medical problems.
 
Don't want to frighten you, but if the eeg is inconclusive, then i would demand to have a Cat scan done to rule out any major problems, such as a brain tumor.

My 2 cents
 
I'm sorry you are going through this--I know how scary it must be to watch your child go through this. I would be really scared too. My son had a couple as well as an infant, but I have epilepsy so I knew a little more about it and had more context for the condition. There are a lot of medication options out there--your doctor will work with you to find options to help get seizures under control. Has be been put on any medications? Usually doctors won't let grand mals go on repeatedly without some kind of treatment with that kind of frequency, even if an EEG can't be scheduled for month. A month is a long time to wait while seizures are happening that frequently. If he keeps having them I would contact the doctor, even before the EEG, and ask about medication options to get some control between now and then, or demand an EEG sooner--or go to different doctor.
 
No unfortunately he has no medication. They won't until he is seen by a neurologist. We've actually had to wait two months for the EEG. Only two more weeks to go and hopefully some answers
 
Newbie said:
No unfortunately he has no medication. They won't until he is seen by a neurologist. We've actually had to wait two months for the EEG. Only two more weeks to go and hopefully some answers
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I hope you will keep us posted with the results. I'm sure the time must just be dragging along. I hope your son has not had any seizures since your first post.
 
Does anyone here just have grand mals? Or am I missing smaller ones because they aren't so obvious?
 
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I have Grand Mal and since I was a baby thats all I know seizure wise.
 
If it were me, I would take him to another doctor. Leaving him with grand mal seizures untreated for that long is wrong--I'd get him to another doctor, even if it is another general practitioner, now, rather than waiting for the EEG/neuro appointment. Sounds like this doctor doesnt know what to do with epilepsy diagnosis so is leaving your son untreated and exposed to risk rather than taking the chance of doing the wrong thing. Even in the ER, many ER physicians will start a patient on a drug in the interim while waiting to see a neuro.
 
I am not confused and worried. I thought this was a place to write questions and get answers from more experienced people. I'm not frazzled or confused I'm just learning from others experiences.
 
Newbie said:
Does anyone here just have grand mals? Or am I missing smaller ones because they aren't so obvious?
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It is easy to miss smaller seizures. A child may just appear to be drowsy, start to fidget with clothing or something in his/her hand, get up and wander, tune out for a few seconds, experience tingling/numbness/twitching in one or more limbs, etc. These may occur and NOT be seizure connected at all, but they can be signs or partial or absence seizures. These signs/behaviors can also occur when you are not with your child or at night (ie. during sleep). An EEG can sometimes identify if these types of seizures may be occurring as well as just the more obvious ones (eg. tonic, tonic-clonic, or clonic).
 
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