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Tue, May 14 3:36pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Not at all! I read every response! We are NOT having surgery she was just sick and tired and her neuro made it SOUND like a quick fix to her. I know it takes a toll on her little body, and has to frustrate her not to be able to get her learners permit like the rest of the kids, to have to take so much medication every day, to me going in her room countless times during the nite to check on her. I'm just reaching out hoping to stumble onto something, anything to give her positive outlook. I want her to be optimistic about her future! I do not want any sort of surgery preformed on her unless there is no other option. Diabetes does run in my family so I've always be strict about sugary sweets, a lot more lenient towards chips though. We grow a garden each year as to save $ and provide organicly grown foods with no chemicals. We eat what we can and I freeze the rest for thruout the winter. That's not to say she never has any of the things you've mentioned but I do try to monitor the things she eats and drinks and keep it as healthy and fresh as possible. We all really do appreciate any feedback we get and it's only to benefit her. We want her to see all options, not just what her neuro said in our visit last week. Thank you Jake for your honest feedback, i take all information right back to her! Showing her what others have to say/think that way she does see that she does have a choice, voice, and is being heard. Thank you!
Dj's mom

Tue, May 14 3:09pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

I hope the doctors are able to help your son! We are blessed Dj's aren't daily…1 a week at most but they are violent and leave her exhausted. It's incredibly hard to watch your child go through such traumatic sickness and not to have the answers, I just keep digging and looking hoping to find something to help her. We have insurance but the medical debt is overwhelming, but blessed to have something that does help a little.
I sure hope that you can find answers and help for your son!! Thank you for responding, it's comforting to having people that care. Much love
Dj's mom

Tue, May 14 7:12am · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Her neuro said he feels her biggest seizure trigger is stress and lack of sleep,I have to give it to her at nite, helps calm her and help her go to sleep. It's been very random and frequent lately…last one was 10 days ago, but was close Saturday afternoon while we were swimming. So we took them home and I immediately gave her the dose of lamctil. It took about an hour but it passed. She just seems to be going backwards. Where we had gotten to where we only had 3 or 4 breakthrough seizures a year for 2 years now we're back to 1 about every week or two, with no response to the diastat anymore, I have to take her to the er for Adivan thru an iv.
Have a blessed day,
Dj's mom

Mon, May 13 3:54pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Thank you!! As I'm reading this tears are streaming, please see my reply to Jake. I just need somewhere to turn, answers instead of dead ends and my child suffering for my failure to be able to control and stop it. What's really broken me down is when we saw her neuro and his answer was 500mg keppra split in half twice daily, adding a pill, same way halved, we can only go to 3 twice daily and then it's off to a surgeon?!?! And my baby says she'd rather have surgery than to keep having to take so much meds…I'm lost…please help
Dj's mom

Mon, May 13 3:47pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Ok you found info I haven't! She has progressed from the cationic to grand mal with puberty…her pediatric neuro has been great up until now. He was hesitant with answers and it scares me! She takes 200mg of lamictal twice a day 20 mg aderall in the a.m. and only if she's in school. A .2mg clonidine at nite. 10mg diastat for when seizures happened. That worked for the most part, had the occasional break thru seizures but the diastat stopped them instantly it seemed. Since puberty really hit about a yr ago, she was a premie, 3lbs 12ozs, was told we'd have some deveopmental delays, they turned into grand mals and it requires an er visit because the diastat failed. Now her neuro added a 500mg keppra halved given a half in the a.m. and half p.m. she's shown the aggressive personality you mentioned. She's hot headed anyways but it is bad since the added meds 8 days ago tonite. amy advise is greatly appreciated!! Thank you so much for responding to me! I feel so useless to her and I'm so frustrated!!!! I can't fix it!!! This is my baby, a mother sees about her children. We also have a 14 yo son that has no medical issues other than pollen allergies…he lives thru it with us in fear of the next one. I'm sorry so lengthy or spelling or whatever, I kind of just poured it all out there. Thank you so very much again! I'll stop here for now.thank you
Dj's mom

Sat, May 11 11:40pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

My daughter's neurologist just added this medicine to her meds she's been on for 8 years. It really seems to be affecting her badly. She's 15, we started half a 500mg twice daily on Sunday. Monday I had to go pick her up from school around 10because she was extremely dizzy. She is adhd, doesn't slow down much but she missed school Tuesday and Wednesday and laid on a mat most of Thursday and Friday. Her doctor doesn't seem concerned and I've always valued his opinion but I'm not so sure if he's right with this partial medicine. Did you adjust to it easily?