Hi Peterpan,

I find it strange why the neuro would want your daughter on the theraputic dose of keppra and then back it down. If the drug is working at the correct dosage the neuro shouldn't back down the dosage because this can lead to withdraw sz. from lowering the drug level. I could be wrong but I ask myself if the keppra is increasing your daughters sz. just like it did with me. Also if you haven't started keeping a journal of your daughter sz. be sure to start one and write down each time she has a sz. put the time down that the sz. happens along with a description by doing this you can sometimes see a pattern in the sz. and what time of day/night or what days of the month the sz. will happen the most. I often have sz. early in the morning when I first get up and am getting ready for work.
It's up to you but you might want to set up an appt. for your daughter to see an Epileptologist since she's having a hard time with her sz. Just go to a University Hospital where they have a Epilepsy Center and you can find a Epileptolgist. By doing this you are working with a Dr. who knows much more about epilepsy and will have your daughter on a lower dosage of AED's (sz. meds) I wish you and your daughter only the best May God Bless You Both!

Sue

Sue, good advice. Yes, the neurologist was hoping we could decrease medications only after control had been reached and only very slowly to see if she had grown out of them in the distant future. (hoping that she fits in the 70% of people who grow out of seizures?)

As for a log, yes, we are keeping a log on my daughter's seizures. We are seeing a pattern of seizures being more common at school vs. home, and usually when she has lower blood sugar. (ie if she forgets to have a snack or after the insulin crash from eating too much sugar). We are adjusting her diet accordingly. She wanted to skip school rather than skipping candy but that is a teenagers treatment plan. Have a great Christmas.

Any thoughts/evidence/experience out there on seizure frequency and low blood sugar?

This is my first post as Friedbrain, but I was on here about 8 ys ago when my brain first blew up (can't remember my old name/pw), and it feels like coming home. Such a great group, and much of what I know, I learned here!

So....what I have to say....a lot of it is not my own wisdom..... If you read here enough, I'm sure you'll see that almost all AEDs have a mix of side effects, so it ends up being what gives the best control with the least amt (or tolerable) side effects, and sometimes it takes a cocktail. Keppra was my second AED to try, and it worked to stop the grandmal seizures (where I was unconscious). I eventually had breakthrough partials (stress of graduate school kept wearing down control of my seizures.... ) and ended up on lyrica. I am 44, average weight, and on a pretty high dose (1500mg morning and 1500mg night).

I am fine on it now, but it's nickname on this board back then was "kepprage" or "keppratude" because it can cause mood swings. When I first went on it, I was also on an anti-anxiety because of a misdiagnosis the first time I was in the ER. I decided to go off the anti-anxiety because I had been taking it for the wrong reason....and ended up like a puddle on the floor. Everything set me off and I was angry or felt like the world was ending with stress. Went back ON an anti-anxiety/depressant and was fine again. So...I don't know if that's how most cope with keppra, but it worked for me. After 6 ys of that, I decided to go off the anti-depressant and have been fine. Maybe my brain adjusted, or it's that I no longer have the stress of graduate school....

Oh, what I wanted to add is that, yes, I'm HYPER-sensitive to sugar and insulin. I am on a self-modified diabetes diet in that I don't eat candy/cookies and REALLY limit simple carbs; I eat carbs in combo with proteins and fats, and I eat multiple small meals. Feel MUCH better when I stay on that wagon! I really believe that my seizure threshold is lowered by too much sugar (I had status epilepticus after cookies right before xmas!) You can get her these low carb chocolate bars (my fav-zone perfect bars). They are incredibly balanced: even trying, I cannot get a sugar high from it. (But they taste great!)

And one more thing (can you tell I miss this group!).....with that calendar, track her menstrual cycles. Mine were always right before my period-called catamenial epilepsy. I have since tracked different symptoms/problems to different parts of my cycle.

Hi all, just wanted to let you know that we decided to continue as advised and keep the course with the Keppra. My daughter is now taking 750mg in the morning and 750mg at night. I am happy to say she has not had any "episodes" aka: seizures for over three weeks now. Her moods seem "normal" for her and for a teenage girl. We are watching closely but the medication seems to be doing the trick even if she eats too much sugar, smells triggering odors, or stays up all night on new's year eve. By the way, we have noticed that when we changed pharmacies the second "generic" version of Keppra from Costco ($40.00/100 tablets) triggered slight positional vertigo where the original "generic Keppra" ($100.00) did not? Anyway, we are encouraged but are eager for the day she grows out of her seizures and can stop taking any medication. Thanks for all the advise and suggestions.