Living with epilepsy - Introduce yourself & meet others

@djsmom
Does your daughter have Epilepsy? If so what type Seizures is she having and what other medications is she on? Personally If my child had Epilepsy and ADHD I would not use Amphetamines. People I’ve known in the past who had children with E & ADHD felt the ADHD medications lowered their children’s seizure thresholds. Although whether or not ADHD medications are the culprit is difficult if not impossible to decipher.
The side effects of Keppra may resolve in a few months. Dizziness and drowsiness are probably the most common. I remember when Keppra came out. It was also causing personality problems, mood and anger issues, easily annoyed even becoming aggressive, these personality issues happened almost solely in women. Keppra has close to if not 100 potential side effects.
Hope your daughter feels better soon,
Jake

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Mostly this is to those here who have children with epilepsy, and some credit given to Leonard, for you. I don't very often write in but I do read here. I'm 64, have had e since approx 23, and have tried probably 90% of drugs out there, when there was about 3-4 only too. ^ neurologists during that time.

I was out of my parents house when seizures started and I have been alone approx 28 years of those, married now for 15. In the beginning my attitude was, no point in taking meds (note too 3-4 available when 22) because they didn't work (and it was true), and thought if I ate well enough I'd be fine. Eating well contributes it's definite good but seizures did prevail. Mine were nocturnal grandM only 1st 20 years but, I had to hide a chewed tongue for a few days at work. Leonard and I have more not so cute stories we probably won't be sharing but... I think the worst of this tour has been INFORMATION (good information!). It's poor enough anywhere, in epilepsy fields as bad, so hang on. A very important note on that !!!.... Not all info will be bad or useless. You can flood yourself days on end, get nothing, and not be sure who/what to trust. A neurologists fact is that they can be a dime a dozen and,,, when an adult with your child, with e,,, neurology EXpertS can have you in panic. DO accept that they could be wrong. Remember that their information at best is just a few years ahead of yours and that their practical use of new info is subject to not enough history on new science/uses. Keep reading and listening to other stories. Occasionally something will come through useful. Visit/read other groups for parents with children with disabilities that are not epilepsy.

My seizures are not GM any more (any more?) but enough to keep me from a regular job. Being self employed got me through that hoop, not everyone can, not as great as some say and it has it's stomach acid too. Disability $ doesn't buy rent these days. Start chasing any source of money you can find to help too.

Leonard has to have been a good filter for e info in his life. Go ahead and trust what he has to give. We (older groups) don't have all the answers but have run through a large portion of junk info to get there. You will find some (older groups) who have given up, think they are doing battle, become too tired and some cynical/angry. Don't let it discourage you. There is an evolution of drug-epilepsy-medical info that our age group has seen that will give you another perspective. I'm not as well equipped as Leonard. I've read his input for a couple years. Go ahead and use it.

Rick

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I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

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I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

Jump to this post

I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

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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

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Jake,

Absolutely no criticism at all. I wanted to convey to the folks that you have a lot of experience in may portions of epilepsy. I don't doubt that you have been a fantastic source for many people you never hear back from. Your opinions, I have found accurate for me. The truth be known, I'm a bit embarrassed to say, is have had and still do, a bit of bitterness for what this country has the ability to give, but knowingly drops the ball.

To listen to children's parents is pretty rough. I feel a bit sheepish every time closing the page and going on about my day after reading theirs. After those I feel fortunate, if the term is fair to use.

I thank you for the information you have given me.

Rick

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@djsmom
You mention “I feel so useless to her” and “I can’t fix it” I think all parents feel like that. But what can parents do? All things considered doctors and pharmaceuticals do a fairly good job. About 7 out of 10 seizure patients are controlled on meds. Of course that’s not helping your daughter but don’t give up. Hope the Keppra works and her seizures are controlled. About 70% of Epilepsy patients have Idiopathic Epilepsy will never know the cause of their Epilepsy. I don’t understand why she is taking Clonidine? Does she have ADHD or anxiety? Since Diastat is a rescue medication I assume she is having cluster seizures. How often do you administer Diastat?
Hope the Keppra works soon and her dose doesn’t have to be increased too much.
Blessings,
Jake

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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

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