July started very terribly. He had 77 seizures on July 1, which was his worst ever by far.
Then, he had a fever of 102 on the 2nd. I didn't really know what to do at this point, so I called the on-call neurologist who told us to go to the ER. This time, we went to the ER at OHSU. We were there for hours. They didn't really know what to do with us. They didn't want to send us home without helping, but there really wasn't anything they could do. They took his blood to get his drug levels, which were normal. The doctor got to see some of John's seizures and ordered Ativan to stop them. I explained that this happens all day, every day, but he didn't seem to accept that. Also, I had put on the admission form that John was NOT to be given Ativan, but I guess they didn't read that form. The guys came in to give him general anesthesia, but Yoshie and I stopped them. They felt really bad for poor John. They finally just gave us some ibuprofen and wrote us a prescription for Diastat, which can be given if a seizure lasts more than 5 minutes.
We really felt like we were in limbo between two doctors. It was frustrating, as it seemed like something that needed to be addressed ASAP. Everything I read made it sound like the brain "learns" to have seizures, so you have to stop them as soon as you can. I called Dr. S's office a couple of times to see if someone had cancelled, but could never get in. So, we just sat tight the first week of July. John seemed more and more like a drugged up kid at this point. In fact, he was a very drugged up kid, so I guess that was true.
We had our appointment with Dr. S. on the 7th. I was trying to build up the courage to demand letting us try the keto diet. Turns out that I didn't need to.
Dr. S. is a very straight talker. In the first 5 minutes that we saw him, he had laid out what he thought we should be doing. The keto diet was number 1 on his list. Woohoo! Then, some other drugs, a VNS, or surgery. He would never put down another doctor, but I got the impression that he didn't approve of the drug cocktail that John was on. He went back to his office at one point and we could hear him dictating the office visit. We knew things were bad, but when we heard him say that John seemed to have Lennox-Gastaut Syndrome, I think the reality set in. LGS is one of the worst epilepsy syndromes, that is characterized by multiple seizure types and mental retardation. Kids with LGS usually digress physically and mentally, and rarely have any success with medication.
He wanted us to start on the keto diet ASAP, and of course we agreed. Unfortunately, the dietician was out on vacation the following week, so we would have to wait 2 weeks to have our initial consultation. In the meantime, they would take care of getting insurance approval, etc.
Dr. S. likes Topamax, and he wanted us to give that a fair trial in the couple of weeks that we had before we could start the diet. So, we upped his dosage to 45mg that day, and increased by another 15mg every 5 days until we got to 75mg.
John's seizures actually went down in number on the higher levels of Topamax, but he was still having a lot of them, and we started to see some side effects from the Topamax. First, he started having a very hard time falling asleep. He would be up until 11pm, and still wake up with us in the morning. It made us all sleep deprived and miserable. And, he wouldn't sweat at all. We weren't warned of this side effect, and learned of it only after we became very scared and did some research. It was very hot, and we don't have an air conditioner in our house. In hindsight, I think we were lucky that he didn't get heat stroke or something. Yoshie always kept cool towels on him,etc.. That may have saved him.
We were getting desperate, of course. Yoshie started taking John to see a homeopath that had been recommended by her friend. We figured it couldn't hurt, and maybe she could at least help with the side effects of the drugs.
While waiting for our first appt with the dietician, we bought the "bible" of the ketogenic diet and read it a couple of times. We also signed up for a e-mail group that proved to be very valuable. We also got the software to create our own meals and we even created a couple to test out.
When we finally had the consult with the dietician, I think she was shocked at how much we already knew about the diet. Our 2 hour initiation lasted only 20-30 minutes, and we were able to spend the rest of the time talking about menu's etc.
Since we still weren't sure if John had some metabolic problem (that could potentially be made worse by the diet), we were to start at a very low ratio - 2 parts fat to 1 part protein+carb. But, for the first 2 weeks, she wanted us to just get John used to the foods. So, we gave him a lot of cream and butter, etc. He seemed to take it OK. We got our glucose monitor and ketone sticks (to measure ketones in the urine).
I think we got overly anxious to actually get started, because we took a ketone reading (just for practice) on July 21, and he already was in ketosis!! We got a little scared a that point that we weren't monitoring anything and being in ketosis could be dangerous, so we gave him a bunch of carbs to bring him out of ketosis. It was sort of ironic that the next couple of days would be some of our best, seizure-wise. We were very optimistic that maybe the ketosis is what caused the decrease in seizures.
So, we officially started the diet at a 2:1 ratio on July 28th, after seeing the dietitian that day. He was allowed 1100 calories, with exactly 15.5 g of protein a day. John was still on a brutal drug cocktail of Depakote, Topamax, and Tranxene. Every now and then a kid will go seizure free almost immediately on the diet, and that was certainly our hope. Unfortunately he seemed to stay about the same those first few days.
There is this rare problem with kids called pyrodoxine dependency. It's a metabolic problem where kids need to take a huge amount of vit. B6. We were hoping this was John's problem, as the fix is relatively easy - huge doses of B6 for the rest of your life. So, we tried giving him 50mg/day for about 5 days. We didn't see any improvement so we stopped.
