We really believed that John was a perfect fit for the ketogenic diet. I think we both thought he would go seizure free in the first couple of weeks on the diet. Unfortunately, we didn't really see any change at all. However, we were still at a 2:1 ratio. Most kids start at a 4:1 ratio (and a 5 day hospital stay). We had lot's of "fine-tuning" to do, so we remained optimistic.
At first, it was pretty hard to get John to eat everything. Because of this, his actual daily calories were all over the place (though never more than 1100). We experimented with menu's. We were able to make a chocolate that was a perfect 2:1 ratio. And, Yoshie even figured out how to make this miniscule sushi that he could have a couple of. His staple food was heavy whipping cream, flavored with Stevia, as is standard on this diet. Yoshie spent many hours every day preparing his food, which had to be carefully weighed to the gram.
On Aug. 4th, the side effects of the Topamax became too much and we lowered his dose from 75mg to 60mg. Within a couple of days, he was sleeping better. His seizures may have gotten slightly worse after this, though. At this point, he had officially failed 3 drugs (though he was still on all of them). It's well known that if a person fails 2 anti-seizure drugs, the chance of ANY drug working is less than 5%. Our real hope was now the diet. And, we began to think about brain surgery. Nobody likes to think about subjecting their 2 year old to brain surgery. But, in fact, this type of surgery is very successful and can actually be a cure. If the seizures start from a single focal point in the brain, that part of the brain can be removed. In most cases, that part of the brain isn't being used anyway, so there aren't any adverse effects. The key is that there MUST be a focal point. We didn't think John had a focal point, based on his first EEG, but we weren't sure yet.
On August 11, we increased his ratio to 2.5:1. It's hard to tell if this did anything or not. It seemed that he had good days and bad days, but overall I think he was averaging slightly more seizures on this higher ratio. That is not what we were hoping for.
One day I got a frantic phone call at work. All I could hear was screaming in the background. My heart sunk. I was sure John was having a severe grand-mal seizure. Yoshie finally got to the phone and told me that John had taken a bad fall and I needed to come home. I raced home to find John with a huge lump on his head. It was bleeding, and obviously was painful. We rushed to the urgent care clinic and they let us in pretty quickly. They said it was a run of the mill bump on the head that they see all the time. But since John was having seizures they thought we should go to the ER. Finally, after a consult with our neurologist, they decided that it was unlikely that this would aggravate his seizures. So we went home with instructions to wake him up every 2 hours at night and to go to the ER if we saw any change. Thankfully things got better quickly and he was almost back to himself by the next day.
Just a few days later, John happened to find some silica gel under our washing machine. Of course he decide to eat it. We tried to wash as much of it out of his mouth as possible, but it was clear that he had swallowed some. For some reason I had thought that silica gel was terrible poison. Maybe it's the big "DO NOT EAT" warning on the side. In any case, it was a huge relief to find out that it's really not a big deal. For a few minutes there, it felt like the world was ending. We were so worn out from everything, and it just seemed like there was no end to the madness.
We met with the nutritionist and the neurologist on the 23rd. Things were going pretty well with the diet, so we decided to go up to a 2.7:1 ratio. We wanted to go to a 3:1 ratio, but decided it was best to take baby steps. Surprisingly, John's seizures began to go down each day after going to that ratio. On Aug 26 and 27, he only had 19 seizures. That was the best we had seen in a long time. It just felt like they were going to keep going down, all the way to zero. Unfortunately, they started climbing again on the 28th, and on the 30th he was back to 48 seizures. In our visit with the neurologist, we decided to try to start weaning the Depakene, then Tranxene. We switched the Depakene (sugary and full of carbs) to Depakote (capsule), and he gave us a weaning schedule. The truth is that we had been reading up on the problems with the depakote/keto diet combo and we had already begun to decrease the depakote. This is the point where we really realized that the doctors have no idea what to do when it comes to epilepsy. It's entirely up to the parents to make the decisions. Since that day, we've made all of the decisions regarding John. We always check with Dr. S, of course. And, so far he has always agreed with what we have suggested. I think he knows that I can study Johns individual situation more than he ever could.
We got the ball rolling on a spinal tap to check for neurotranmitter problems, as well as a full metabolic workup and another 24 hour EEG to check for a focal point to his seizures. No date was set yet, but they started with the paperwork to get insurance approval, etc.
We also decided to try the B6 again, thinking that maybe we just didn't give enough before. We gave John 100mg/day for a week, then upped it to 200mg on Aug 31. This is about 100 times the recommended daily allowance for a 2 yr old. We didn't see any dramatic change, but decided to keep with it for a bit longer.
Yoshie continued to take John to see the homeopath during August. She wanted to check for heavy metal toxicity so a hair sample was ordered. Hair samples are laughed at in western medicine, but we don't care. We'll try anything.
On a personal note, Ironman Canada was the last weekend in August. This was very hard for me to miss. I had signed up a year earlier, and had trained up through June 6. My last Ironman (Couer d'Alene 2003) was a disappointment, so I was so motivated for this one. I at least wanted to go up and cheer on my brother and friends, but there is simply no way that I could leave Yoshie under these circumstances. I know it's a huge longshot, but I signed up for IM Canada again for 2005. Ironman training takes a huge time commitment, so I really wont be able to go unless we can get John seizure free and learning again by March or April.
