John started September having 35-45 seizures per day. He was on 60mg of Topamax, 7.5mg Tranxene, 200mg B6, 175mg depakote, and a 2:7 ratio on the diet. By the end of Sept, the depakote and B6 were gone, Tranxene was down to 5.63mg, Topamax was down to 30mg, and we were on a 3:1 ratio. In hindsight, that was way too much to be changing in that short of time.
We started the 3:1 ratio on Sept. 2, and we also started aggressively getting rid of the depakote at the same time. John continued to get better for about 2 weeks. Again, it felt like we were on the right track to beat this thing. On Sept. 15, he only had 14 total seizures (7 clusters) in the entire day. That was 2 days after the depakote was completely gone, and about 2 weeks in to the 3:1 diet ratio. I wish we would have stopped right there to see if John could maintain this level. Of course, at the time, we still thought we could do better. Once the Depakote was gone, we started working on the Topamax. We really hated all these drugs, and had a hard time deciding which to get rid of first. The Tranxene is the most addictive, so sometimes we thought that should be first to go. But, the Topamax was causing extremely low blood CO2 levels, which was hampering what we could do with the diet, so we ultimately decided that was more important. The B6 didn't seem to help at all, so we discontinued it after about 10 days.
Once we got the Topamax down to 30mg/day, John's seizures started to creep back up in number. By the end of Sept, he was back to having 30+/day.
Also, in early Sept. I took a day off work and we went to see the homeopath to talk about the hair sample we had tested. This was actually the first time I had met her. She was very nice, but it became apparent to me immediately that this was completely outside of her expertise. She was really against the ketogenic diet, which I found extremely strange. I mean, we're talking about a DIET that can CURE epilepsy in 2 years. She thought we should go off all medicine and the diet, and follow her lead. She gave me some articles from 100 years ago that told of homeopathy curing seizures. I asked why there weren't any more recent stories, and she didn't have a good answer. I know she meant well, but I truly believe that if this were her kid, she wouldn't be relying on herself to cure this.
The hair sample showed that John had a very high level of aluminum. Now, I searched high and low and could not find any relationship between elevated aluminum levels and seizures. I'm still not sure what to make of that. Western doctors won't even discuss hair samples, and after doing a little research, I understand why. Still, we're keeping that in the back of our minds as something to follow up on. I'd like another hair sample test at some point to see if it still shows this elevated aluminum.
I left her office pretty upset. I tried my hardest to avoid a confrontation, and I think I was mostly nice, but I think she knew that we would not be coming back to see her. Still, we got rid of all aluminum cookware, and John hasn't had a drink from an aluminum can since. And, since flouride can make aluminum worse, John has been drinking bottled water since that day.
We got the appt. for John to get the spinal tap, video EEG, and metabolic workup. That was set for Monday, Oct. 18.
