Sending cyber hugs -- I'm a Mom of a 10 year old who has tonic-clonics, often in his sleep, and we've gone through the horror of having one tonic clonic after another and having to be in ICU and all that. And after 9 years of seizures, we still don't have a cause for the seizures, although we now know some of the triggers. I'm guessing that puberty may have been a trigger for your daughter's seizures, and it's possible that she may have more seizures around the time of her monthly period.
First thing I recommend, due to the intensity/frequency of your daughter's seizures, is that you get her to a neurologist/hospital that is a level 4 epilepsy center. They will (hopefully) be on top of the best treatments for adolescents with seizures.
As Janus mentioned, there is an adjustment time for new meds (you have to gradually increase the dosage), and sometimes it takes a little while to find the right med. For something like 1/3 of people with epilepsy, the first med works to control the seizures, and for about another 1/4, the 2nd med works, and then there's the 40% (of which my son is a part) who have what's called intractible epilepsy, which doesn't respond well to meds. But it doesn't mean it's a hopeless case -- just that you have to work harder to get seizure freedom. Jonathan has now been seizure free for almost a year (hurray!). But it was a long hard battle to get there. We went through 10 seizure meds before we found one that worked, and also experimented with various supplements and diet, and it's a combo of all 3 that finally got the seizures stopped.
Here's what worked for us:
1) Ketogenic diet - an extremely low carb, moderate protein, high fat diet that changes the brain's fuel from glucose to ketones, and somehow this stops seizures -- about 50% success in children/teens with intractible epilepsy accdg to studies at Johns Hopkins and Mayo where the diet was developed) - - more effective than any med on the market, with very mild side effects (compared to the horrendous side effects of seizure meds). A MAD (Modified Atkins Diet) is now being used successfully with adults. This diet is very strict, and most nutritionists recommend that before initiating it, you should first try an easier approach, such as removing gluten (wheat, etc.) from the diet, and sugar. The LGIT diet (you can do a search for that here) works with controlling the glycemic level (blood sugar) which can be a big trigger for seizures.
2) Zonegran (Zonisamide) -- different meds work well for different people. Topomax worked well for Jon, for 3 1/2 years, and then stopped working. Most other drugs didn't help at all. A little over a year ago, Jon was put on Zonegran, and this stopped the tonic-clonics immediately -- even on the very low, initial dose. But it didn't stop the tonic seizures he was having in the daytime, so it took another 3 months of experimenting with meds, supplements and diet to get them stopped. We found that less is more, with regard to drugs -- adding on additional drugs actually made things worse, but increasing the Zonegran dose did help. However, like all anti-seizure meds, this drug is quite harsh -- it causes acidosis and cognitive dulling -- which is why his neurologist is now tapering it down (since he's been seizure free since the end of Jan 2012).
3) Supplements
- a good multi-vitamin that's esp high in the B vitamins and also has some good stuff like Selenium
- magnesium (at bedtime) - this has anti-seizure properties, and also helps with calming and sleep, which is good for nighttime seizures
- calcium (at bedtime) - also helps with sleep
- zinc (his nutritionist prescribed this for his chronic diarrhea, but it also has anti-seizure properties
- MCT oil - (Medium chain triglycerideds derived from coconut oil) - this helps with changing the body's brain fuel over to ketone -- a lot of children and adults on the Ketogenic/MAD diet use this as a supplement
- fish oil - may have anti-seizure properties, and also helps heal and protect the brain from damage caused by seizures
Sorry this is so long. I would advise reading as much as you can in these forums -- they were invaluable to me in finding the last pieces of the puzzle for seizure freedom.
