I can COMPLETELY sympathize!! Our Jon (who's eight) is now on his 9th med. Most of them didn't work -- the latest cocktail (Zonegran and Keppra) seem to be giving some relief.
Just some thoughts based on our own experience:
1) Jon DID become seizure free (from tonic-clonic and tonic seizures) for almost a full year on the Ketogenic Diet, and was able to come off of ALL meds for awhile. Might want to give that a whirl. This med is especially helpful for myoclonic seizures (He recently had a relapse, but see below)
2) We have found that gut issues are causing issues with Jon's seizures (perhaps even part of the cause of the seizures). He tends to have chronic diarrhea -- and this has skewed the Ketogenic diet, because when he's having diarrhea, he's not absorbing the fats correctly. It also prevents the meds from being absorbed correctly -- so it may not be that the meds aren't working, but that he's just not absorbing and metabolizing them correctly.
So...after a brief hospitalization, we have been working hard to tackle the gut issues (eliminated some foods that seemed to increase diarrhea), and he has much better seizure control -- we're now going 3 or 4 days seizure free, when several weeks ago he was having anywhere from 1 to 9 tonic seizures a day. He's also almost completely weaned off of Diazepam now, so that's one less med!!
Jon's seizures are different from your daughter's, but here's a run-down of his meds and side effects and efficacy:
1) Keppra - he was on this from age 18 months to 2 years. At this point in time he was having infrequent tonic-clonic (grand mal) seizures --about once a month. The Keppra did not decrease the seizure frequency. Side effects as a baby were depression (didn't smile or laugh much during that 6 months).
However, it was recently added back in (about 4 weeks ago), and at a higher dose, it does seem to be helping with the daytime tonic seizures -- especially the photosensitive ones. I also believe that this med is especially helpful with Myoclonic seizures. Side effects at age eight (almost 9) are aggression (pinching, slapping, scratching) and super-hyperactive frenzies. However, the hyperactivity has been calming down since we've been weaning Diazepam, so it seems the two meds were acting as some sort of catalyst.
2) Topomax -- he was on this med from age 2 to age 6. It gave him complete seizure freedom for 3 1/2 years (from tonic-clonic or grand mal seizures), and then stopped working, even at very high dose. Side effects: at low dose, none except that he didn't sweat, so had to be careful he didn't get overheated. At high dose he lost most of his spoken language.
3) Trileptal -- he was on this from 6 1/2 to age 7. Horrible horrible horrible!! His seizures got worse, and he became psychotic and hyperactive -- to the point that his teacher's aide thought his was demon-possessed, and the principle of his school was working very hard to get him kicked out (she couldn't do that legally, because his behavior issues were related to his disability/meds, but she tried her darndest).
4) Lamictal (sigh!!) allergic rash, vomiting, diarrhea -- only on a few days.
5) Depakote -- age 7 to 7 1/2. Little effect in the beginning, but did work in conjunction with the Ketogenic diet. Bad side effects -- bone marrow disease and damage to liver -- had to wean off after 6 months.
6) Ketogenic diet (Johns Hopkins protocol 4:1 ratio) -- started at age 7 and still on now. Didn't work for first 6 weeks, then kicked in and gave complete seizure control for almost 1 year, even when we had to wean the Depakote. Recent relapse, but probably because of diarrhea -- we think if that is under control, the diet will kick back in. Jon didn't have any negative side effects from the diet.
7) Clonazapam. This started out as a rescue drug, then he was on it for about 1 week every night. It didn't seem to stop the seizures, but the side effects were wonderful!! He was much calmer, less agitated, very self-controlled and focused. Unfortunately, you can't stay on Clonazapam very long because it's highly addictive, and the body grows tolerant.
8) Diazepam (Valium). When he was weaned off the Clonazapam he was put on Diazepam to prevent breakthrough seizures. We didn't see that Diazepam helped with seizure control, but unlike the Clonazapam (both drugs in same benzo family), it caused severe hyperactivity and aggression and insomnia (Valium is supposed to calm you and make you sleepy, but in kids it can have the opposite effect). The side effects lessened as we lowered the dose. He's on his last week of this med right now, and we're glad to get rid of it!!
9) Zonegran - Jon started this about 2 months ago. It worked immediately at a low dose to control the tonic-clonic seizures. He recently started a higher dose at bedtime, and that has helped him to sleep much better at night and has almost eliminated the nighttime tonics. Side effects have been a severe loss of appetite (but giving at night has been helping with better daytime appetite), diarrhea, and now at a higher dose, he requires a couple brief daytime naps (but I'm not minding that).
Also, some supplements that we have found helpful are magnesium (helped a lot with sleeping at night), fish oil (helped cut back on seizures, and also I think good for his gut), and a multi-vitamin with lots of the B vitamins and other good stuff like selenium, etc.
