New to this... very scared!

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mpalamar

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Hello all, I am new to this forum. My 4 year old son was diagnosed this week with epilepsy, and I'm not going to lie - I know nothing about it! He began a few weeks ago just randomly blacking out and dropping to the floor and coming to immediately after he hit the floor. Earlier this week he had 2 seizures (one while at Daycare and a second one a few hours later while in hospital). His CT scans were clean for any growths or tumors, his blood work was fine. They did 1 EEG on him which came back normal. They kept him in hospital for 3 days on anti-seizure meds and he was fine. They released him without meds. Today he had 3 more seizures (within 5 hours) and was rushed back into the hospital. I am very scared right now, very scared. I don't know if this many seizures in such a short period of time is uncommon or normal. He will be put on meds (as the neuro said last time if he has a 3rd seizure he will put him on meds after). I need to calm down, I need some reassurance. I need to do a lot more research to understand this and find out what his triggers are etc... but they seem to be very random. Regardless, I am scared.
 
Deep breath. We've all been through it. Most of us just with ourselves though. It is terrifying at first. And so confusing. Something like 70% of people with epilepsy have no known reason for it so it's good that his EEG etc has come back normal and not unexpected. It's good that he's being put on anti epileptic meds because that should help control it so he can resume a fairly normal life. All you can do for now is pad through the testing and doctor visits for a while and try and learn as much as you can because you'll feel better if you're better informed. I recommend hitting the local library or an online bookshop like The Book Depository and borrowing/buying some good books about childhood epilepsy to help fill some gaps and give you more info.
I know it's tough but believe it or not one day it won't seem so terrifying.
Good luck.
 
Thank you for your reply. I have the tendency of researching things out the wah-zoo so needless to say this will be at the top of my list now. I have never known anyone with epilepsy so that makes it even more scary as I have never experienced this first hand before. Trying to focus on him and not making him feel like something is wrong with him is also a priority... I don't want him to feel "different" than the others (I have 3 other children, none of which have ever had a seizure of any kind). What would you suggest would be some good things to consider in these early stages of accepting and education? Any tips to help him cope or understand as well? I wont be sleeping tonight, I have a lot to learn...
 
Oh by the way - since posting the initial post, hes since had another seizure... We are waiting for the neurologist right now.
 
You'd be surprised - you probably do know people with epilepsy you just don't realise. That's how well most of us hide it ;) If it's well controlled there's no reason anyone else would notice. Hopefully your son will gain a good degree of control once the right med is found and it has had time to kick in. Most take a week or two to really start doing their job. And some work better than others for some people.
Depending on the age of your other children there's a range of books for both kids with epilepsy and kids who are related to or know someone with it. When my children were younger I read them a book called "My Mum has Epilepsy" but they're capable of taking more in about it now and I've just bought them some more in-depth books. You just want to explain to them in the simplest way possible that the electricity in your son's brain sometimes short-circuits and this causes him to drop down and have a seizure. You don't want to downplay the severity of his condition though because if you're not around one day when he has a seizure you want them to get help. It's a time of learning and adjustment for everyone.
A good place to turn is the Epilepsy Society/Association in your country or state. They have trained nurses available to talk to you and your children to help everyone understand what's going on. They're free and they're usually available immediately unlike neurologists. They also often run camps for kids affected by epilepsy (themselves or within their family) to help them meet other kids in their situation, learn about the condition and most importantly not feel so abnormal. My kids are attending their first camp later this year.
All in all just remind yourself that "this too shall pass". This all won't seem so daunting one day.
Best wishes.
 
Welcome! I know it is so confronting and scary to see your child have a seizure. My 19month old started around 7 month but his Nureologist thinks he was actually doing them a lot earlier but GP kept putting them down to other things.
This site is amazing and there is so much support. I have learn't so much from everyone on here. Before my son started on his journey I though Epilepsy was someone lying on the ground and all their limbs shaking, how uninformed was I!
My sons journey is still continuing and they are gradually putting together the pieces of his jigsaw puzzle in an effort to diagnose what is really going on. He has 4 clear eeg's before a 5th showed slowing on the back right of his brain, his eyes rolled up during the light test on 2 eeg's yet his brain waves barely altered. Nureologist decided to wait to do an MRI until he turned 18months and he also had a Lumbar Puncture at the same time as metabolic specialist is also trying to assist Nureology team. His MRI cam back with inflamation on his putamen which his Nureolgist is looking into more with other specialist we see him Thursday for results and then we get his metabolic results at the end of Aug.
I know i felt so useless and still do when he does his strange things. My son has had a variety of different types of siezures, plus other strange things, yet he still is the friendliest little 19month old with a smile that melts anyones heart.
I am learning to be more patient and each time we gain a new bit of information I find we are one step closer.
We now have a night vision camera with motion detec in his room so we can check on him if something is happening without actually going into his room unless he needs us to. It also has allowed me to be able to look back over what happens over night if I need to.
I am a teacher and teach several kids who have epilepsy and you would never know. To help me try and understand a bit more about what my son is going through I sat down and talked to them about when they have a seizure and they were fantastic and the one thing they said was that they don't remember their seizures just feel disotientated when they are over, this in a way was conforting to me.
Take Care.
Donnajane
 
@mpalamar: Hi, I totally understand what you're feeling right now. My 7 mos old daughter is having the same situation. My daughter's condition started when she was 4 mos old and now she's 7, she is still getting seizure attacks. Same as yours, all tests came back normal. 1 MRI, 3 EEG's BUT on her last EEG, they found out some abnormalities. They saw some wave spikes on her right occipital. My daughter is being diagnosed with myoclonic seizure but it's not yet 100% sure. Right now, she's taking anti epileptic drugs but sometimes it turns out useless.

What meds did your neuro prescribe your child?

Hope he gets well soon.
 
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