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Parent of teen with a new diagnosis
Tue, 03/27/2018 - 11:28Topic: Parents & Caregivers
Hi - my 17 year old had her first and only seizure this summer. It was terrifying, but she received terrific care from first responders and Buffalo Children's Hospital. MRI, CT Scan and toxicology were all negative. We returned home to New England the next day and an EEG showed a low seizure threshold and she was put on Keppra. Keppra nearly destroyed her. My athletic, high-achieving Honor Roll child was an absolute mess. The neurologist seemed to only want to medicate her and wrap her in bubble wrap. We finally convinced her that Keppra wasn't the right choice for our daughter, and she pulled her off that and started Lamictal. That was much better until she tried to increase the dosage beyond 125 mg. Then the overwhelming anxiety, flashes of anger and complete inability to concentrate started again. My daughter failed two of her midterms and nearly failed a third - that isn't her. We pushed again, and got the dosage returned to 125 mg and insisted that she would be allowed to ski this winter (she is a member of the National Ski Patrol and captain of her high school ski team). Skiing brought back the joy that was missing, but she still struggles with concentration and comprehension academically. She only had one seizure. It was six weeks between that seizure and the start of meds - and that period was seizure free. The meds seem to do more harm than good. Has anyone else had such an experience? The current plan is to keep her on meds for two years and then wean her off - she is supposed to be a freshman in college then! I want her to spread her wings and LIVE....but the meds seem to be limiting her ability to do that. Any advice for a mom new to all of this? We are in the process of trying to get a second opinion and maybe a new neurologist, but it's painfully slow. The current doctor is certainly capable and professional, but my daughter deserves a doctor that knows and treats HER, not just a seizure. Any advice?
Comments
There's kind of a push pull
Submitted by Amy Jo on Tue, 2018-03-27 - 12:52
There's kind of a push pull between parents new to epilepsy treatment and docs - the docs have seen a lot and have some solid approaches that they don't give up easily even in the face of a patient that maybe isn't the typical patient. We know that everyone responds differently, but most people respond pretty well to the standard approaches. If you've given a medication a good try for a reasonable period, that's enough to push for better. I've known some parents (of little kids) that gave up on a med too quickly and regretted it later on.The seizure with and EEG showing activity is something that should be treated. Seizures often start slowly, many are not recognizable as seizures (many generalized and partial seizures can often be missed as seizures), so assuming she's only had one is maybe not the right characterization, she's only had one big or notable one. Seizures that show up in later teens are not always ones that are limited, be prepared for this to not be a temporary issue. And college students can fall off the treatment wagon or complicate things with forgetting meds, not sleeping, extra stress, trying some recreational drugs and drinking. You'll get more buy in from your daughter if she drives the choices. You can prep her for appts to be able to advocate for her wishes and let her talk and just clearly backing her up.Do you know if her seizure problems are generalized or partial in nature? Keppra and Lamictal treat both kinds of seizures. That info may help drive requests for other medications. If it isn't known or explained, that's something you want from the second opinion. A new neurologist is worth trying but make sure it's someone your daughter can talk to, she needs to be the primary talker at her appts.Everything takes forever in the neurology space.
I know you are looking for a
Submitted by kaitlyn.beaty16@gmail.com on Fri, 2018-04-06 - 01:16
I know you are looking for a mother's advice, but I am 19, and have had seizures for about 5 years. I have been put on about six different medications. Keppra is awful, I agree. Don't ever put your child on more than 200 mg, because it takes forever to wean off of it without causing kidney and stomach problems. I've had kidney stones, gallstones, and now have stomach issues because of Keppra. I am now on Lamictal and Topomax. I would suggest maybe 25 to 50 mg a day. Just to make sure she can function and be her happy go lucky self. Topomax is good to in moderation. For future reference, Depakote will ruin a person, and so will Trileptal. I would never take those again, and would not recommend them under any circumstances. A good, healthy schedule can help too. Taking meds at the same time, eating at the same time, going to sleep and waking up a the same time. It really helped me. I had seizures a few times a week, and know I have maybe one a month. Good luck, and I'm here if you have any questions. Sorry for the extremely long reply.
Hello parent of a teen I
Submitted by certwelder56 on Tue, 2018-03-27 - 12:18
Hello parent of a teen I have had a seizure disorder since I was your daughters age. That was many years ago. I had hoped they would have had a fool proof solution since then, sadly they do not. What they do have now is a support network you can navigate though to help you find a solution for you and your daughter. the drugs they use (now) have greatly improved over the ones they started me on. I, like your daughter went thought a difficult identity crisis. I still do to this day. I'm not saying it's the drugs or not but just the thought of this becoming permanent can push anyone away from what they were. Hopefully things will change for the better and she will resume a normal life. If not look at this website for specific things that may encourage you both. Just to let you know I'm always looking for new solutions to help me. Good luck.