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optimisticmom

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Hello CWE...

I just thought id come and introduce myself. My name is Chiffon, I have shared some of my sons history in my profile. I look forward to reading and helping everyone the best I can as well as get some feedback to those who are dealing with similar issues as us.
I know that we will all overcome our obstacles with epilepsy, just keep faith & support each other and know that He is with us all...


:hugs:
 
Welcome

Hello and welcome. I am new to this site as well. My son is about to turn 12 and was just diagnosed with generalized epilepsy. He has had 1 seizure but due to abnormal and seizure activity on eeg is starting medicine today. I am so sorry to hear what you and your son are going through. I understand about trying to stay positive but crying after they go to sleep. It is heartbreaking to see your child suffer like that. I have felt so alone at times and this forum has helped me to understand I'm not alone. I hope it does the same for you. There is a wealth of knowledge here so hopefully you can find answers. Peace be with you and your precious son.
 
Hi new moms--I have epilepsy myself--my son, I hope, does not. I say 'hope' because he had two seizures as an infant and none since--he is now 17. I love him ridiculously and know how I would feel if he continued to have seizures. Optimisticmom: If I were in your shoes I must say I would not be inclined to be satisfied with the psuedoseizure diagnosis yet. You say these are happening at night--by this do you mean in his sleep? Psuedoseizures are rare during sleep, and are often not responsive to medication. I'm not saying they aren't pseudoseizures but I would seek a second opinion from an epileptologist, which is a doctor who specializes in epilepsy, before I was ready to accept this diagnosis. That is an awful lot of seizures to be having in his sleep, and to have a positive response to a seizure medication. I wish you both luck and strength, and know that our children are resilient, and often suffer less themselves than we suffer watching them go through their life difficulties.
 
........ikr

Thank you Lindsey for replying to my post. I totally agree with you on not settling for that diagnosis. I will not stop until my gut and mind are at ease that we have the right diagnosis and medication. My sons generalized seizures or grandma seizures come on at night about 20 minutes after trying to get to sleep. He's in and out of them for about 30 minutes. Unfortunately we ended up in the ER on Friday afterschool b/c he loss consciousness on the bus. ER reported that we needed to follow up with neurology ASAP. Then no sooner when we got home and ate and meds were given, he had a rough night with multiple convulsive seizures as well as losing consciousness again with confusion when he finally came to after about 20 minutes battle. Saturday night wasn't any better. We were at a friends house and he had a generalized seizure as well as a few stare offs. EMT took him in to a different hospital. I learned that my son suffers from focal and generalized seizures. Doc informed me that the medication given to us was to lower the thresh hold of his seizures. Never once was I ever told what the medicine was for other than to give it to him at night. I know that what we are going through is true seizures not pseudo seizures. (Just thought id share an update from this weekend)..
Hope everyone is doing ok...I keep faith and pray....
 
Im sorry to hear your son has epilepsy. I hope he gets better and doesn't have anymore attacks. I too have felt alone at times. I agree that this site gives us useful information and as I call it "ammo for my shotgun" to the neurologist.lol..not seriously though..I just don't like being lied to nor have my child looked at as if its all in his mind. SMH...
Lets keep in touch..:)
 
Hi optimisticmom - welcome to CWE :)

As you can tell, it's a great site for info and support!

I am impressed by the attitude you have towards your neurologist, so many of us have problems with them- having to put up with uncaring, incompetent so-called 'specialists' just dishing out generic BS, because epilepsy cases are so subtle and varied, they don't have the time or ability to treat us as individuals.

If you do find one of the few that really knows their stuff, and treats you well- hold on to them, even if it means travelling a long way to see them..
 
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