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#1
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New hereMy 13 yr old son was just dx with absence epilepsy in January of this year. I am trying to find out everything that I can about this to help him and me to take care of him. Its hard to understand some of the things that I have been reading on this. The medications have a ton of side effects to them. I want to know how it makes other people feel when they take it. Its hard to get my son to tell me how it makes him feel because its all new to him too. I am trying hard not to freak out about it. On top of this he also has asthma too. My son is so tired of taking medications all the time. I just need some advice from others who are dealing with this too. I guess I way to vent some as well. Thank you for listening to me. ![]() |
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#2
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| Hi rockybambam - Welcome Take a deep breath. My daughter was 14 when she had her first tonic clonic seizure. I also had no knowledge and scoured the internet learning. I did not know about CWE at the time, but I found a few others and slowing have acquired an education that is helping me to cope. We have tried a few anti-epileptic drugs and were unsuccessful so far. Right now we are on a different path, and I hope it will shed some new light on our situation. It is highly individual as to how someone with E will be affected by meds. What many will suggest is to keep a journal and write down anything out of the ordinary. I use a calendar that I print out and I have made it color coded so that I can glance at it quickly. I write down changes in the diet, sleep, stressors. I think over time you might get a better picture. How often are his seizures? I was told that many children that are hit during the teen years seem them reduce over time. I hope your son is one of those. |
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#3
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| Hi rockybambam2001, welcome to the forum. ![]() A good starting place for those new to epilepsy: epilepsy 101 My wife completely eliminated her multiple, daily absence seizures over ten years ago with ~5 months of EEG neurofeedback sessions. I highly recommend it.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback |
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#4
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| Yes, it is hard feeling like you are the only one. You are doing a good thing reaching out and learning. When I was a kid it was so different. But now I have my own child with epilepsy and everything he has been on I am on also or have been on. Its a matter of questioning. He gets embarrassed with mommy because he does not want his epilepsy to be as bad as mine is. So I ask him things like do you feel like throwing up, or are you dizzy or tired? Do you think you could go play a game of basketball? lol It sounds funny, But if I write this down and hes moody its something I can tell the doc. I so remember feeling like that as a kid. Getting it than not getting it. thats a good question to.My boy just tells me his brain is not working today. I know this is not going to fix everything . But maybe it's a start? Good luck. Teresa |
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#5
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| Bernard, do you really look like that? |
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#6
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#7
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#8
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__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback |
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#9
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| Thank you for giving me a warm welcome. I just want to have as much information as I can get on this. The not knowing is the worst part. I am just going to take it one day at a time and not stress myself out if I can help it. Thanks for all your input. I am sure I will have more questions to ask later but for right now I will am going to read what all I can than come back and ask ??????????? on what I don't understand. Thanks ![]() |
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#10
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