does any1 have a child with epilepsy ,and if so do you have advice or words of incouragement?

Question

my 8 year old was diagnosed 4 years ago and we have had little to no success with medications.it`s very difficult to watch my son go through this .any response would be helpful thanks

Answer 1

60 years of experience with epilespy has taught me that these 3 things are the most important. Do these and everything else will fall into place.

1. be realistic but don't treat your child as a sick person.
2. realize you're never going to like it, but instead of epilepsy being this much of his life (hands spread wide) help your son realize iit's only this much (hands 2 inches apart).
3. never give up trying meds until you find one that works.

Answer 2

I have epilepsy which started spontaneously when i was 19, mind you I know I'm older but to my mother it didnt matter. She had a very hard time watching me having siezures and she has a very hard time understanding them. I often hide them from her so she doesnt feel bad, i however have come to accept them and am generally more frightened by an attack because of the effect it has on those around me. This is difficult for you Im sure, there is a certain amount of emotional impotence that no doctor or medication can really alleviate. With time you might find something to control the siezures, but most important though is that when he is older and he has a full grasp of what this means- he doesnt feel as if this is something to be ashamed of. He, and you, have to understand that it is terribly interuptive to life but you have to keep living and knowing that the sum of your person is not a disease. Keeping your head straight is the only thing that is going to help you when...your head isnt really staying in one place. As a parent, you need to just help him do that.

Answer 3

You may think I'm crazy, for what I'm about to tell you, but when a child or person has this, though it is an illness, it is also something rooted since birth and actually before, believe it or not this comes from ancestry, spiritually speaking. You do need more than words as far as encouragement, if you are willing to explore and most of all help your child, it will take a big commitment from you and your wife. It is a subject that I'd have to go into in depth, the only issue is I would take a few pages to explain some of this stuff, causes, yes, how it occurs, and its remedy, feel free to email me, besides words of encouragement there is so much more underneath this all. My email is: [e-mail]

Answer 4

change doctors,,the seizures can scare you,grandson.age 3 going from phenobarbital,, to Dalton, go to a support group.you can get alot more information from other parents, first generation drugs will not work on 2 generations,keep a journal about every seizure,how long,hospital records.if the went to the hospital what they did ,ask for copy's..and medical Doctor do gene testing,are better then those who don't.its never easy when your child is sick or has something.but when you want the answeres and they dont give them to you ..its more scary,,and these chirldren are not given ,social security disibilty,so most mothers have to work ,in a half daze becouse they know at any time,they will get the call about the next seizure,,go on web sites,canada medical treatments,mayo clinic,chrildrens hospitals,,good luck,,

Answer 5

I am very sorry, but this disease is mostly manageable. Are you seeing a specialist? You should also go on the web site for the National Epilepsy Foundation. I would switch doctors for sure. The site has tons of info on there including all kinds of info on new medications. Best of luck.