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walking the passageways just waiting
Mon, 10/23/2006 - 07:48Topic: Parents & Caregivers
thats how I feel. god knows how my 14yro daughter feels wont talk about it. you would think that since she is getting the VNS installed this wednesday she would have 50 million questins but she doesnt. she keeps it all inside like her dad... oh wait thats me... try to involve her and ask her to write down some questions she has for the doc and you look at them, and they are basic ones. no thought was put into them, just a robot paper, pen, write, done. I know this device isnt a over night mircle or a wonder drug but any improvment in her school grades and attitude would be a tremendous help..... ok sorry enough venting..
scott
Comments
Re: walking the passageways just waiting
Submitted by deb_walk on Fri, 2006-12-01 - 08:50
I have a 16 yr. old daughter that is the same way. She has had the VNS implant last year in October. She never ask questions just ok. I am not sure if it is because just disinterested or that she doesn't want to put to much hope into anything. One thing you do have to understand is that these kids deal with everyday the things they miss out on because of seizures. Like driving, finding friends that can deal with the seizures and not shy away so it is alot of stress and frustration. Maybe instead of counseling if she likes to get online put her on the teens part of epilepsy and let her talk to someone online instead of face to face. I just found this website due to my daughter being evaluated for brain surgery. I hope the VNS works out for your family. Please let us know. Debra
Re: Re: walking the passageways just waiting
Submitted by ScottM on Fri, 2006-12-08 - 15:22
Hi Debra, so far (with not getting our hopes up) it seems to be working some what. my daughter is getting better grades (especially since she is in 9th grade bad yr from what everyone tells me) and the two of us can spend more than 5 mins in the SAME room w/o WW III breaking out btwn us. only time will tell the whole story. I've tried to get her on this site but she just wont talk about it. i got her a log in for here and she has been up here maybe twice three X's the max. I'll hate to be in the same room with her when the doctor tells her she cant drive. in SC she can get her permit when she's 15 (thats next July or not)but you are correct i couldn't imagine spending 8hrs at school and only remember bits and pieces that would drive me crazy. her scare on her neck she tells everyone that her cat scratched her. only a few of her friends know she has E. and her soccer coach. we shall see. is your daughter going in for the brain surgery?
scott
Re: walking the passageways just waiting
Submitted by Michtom on Wed, 2006-10-25 - 03:45
I hope things have gone well with her VNS. I understand your frustration. My daughter (nearly 12) refuses to discuss how she feels about her E, and won't interact fully with her specialist even though he is really nice and if you ask her she says she really likes him. Instead she sits their feigning disinterest, and when we leave is angry because she feels I did'nt say the right thing or agreed to something she didn't want. Part of it with her is denial and anger that she has developed E, and I have tried to encourage counselling. but its difficult. I also worry that she doesn't fully undersatdn what is happening and worries over the unknown, but I can't address her concerns if she doesn't talk about it. I read somewhere that very young children have this natural impression that their parents are omnipresent beings and should just know how they feel and what they want to say (which is why they assume you know how their day was and what they did at school etc) - and I think sometimes older kids also revert to this when they are under pressure. Good luck.