Diet Update

At the beginning of last month I really started tracking what Brendan was eating and when he had seizures very closely. This corresponded pretty well with when we increased his dose on the Keppra to 4ml 2X day. At first it was hard to keep track of everything, although I don't try to be perfect, but it got easier as I got used to it. The frustrating part was the lack of pattern. Although I'd still say he averaged about 10 seizures a day, one day he had four (a day that I know he didn't get enough rest and was out of routine) and the next 18 seizures (when I made sure he was back on schedule, etc.). Obviously, this could be due to a delay in reaction, but it's so hard to track or see a pattern.

On 5/20 I began to consciously start cutting carbs from his diet. We've been pretty relaxed about this and have quietly reduced his grains to pretty much nil. We do let him have a few tortilla chips (his favorite) now and then, and occasionally he'll eat a small amount of rice with us (another favorite), but breads, etc. are pretty much out. That wasn't too hard overall. Cutting down on the hidden carbs, mostly in sweeteners, etc. is much harder. He's never gotten that many pure sweets, and we've pretty much eliminated candy and cookies with no problem. But, he's pretty much addicted to these yogurt tubes (that you squeeze into your mouth) which is great for the calcium and fat, but they also contain a fair amount of sugar (no High Fructose Corn Syrup or artificial colors/flavors). If we're being serious about the diet, then there are certain veggies and fruits that are lowest in carbs. At this point, I will continue to give Brendan any veggies or fruits I think I can get him to eat. Luckily, berries are the fruits lowest in carbs and blueberries are probably his favorite fruit, and he LOVES broccoli, and will eat raw sweet pepper which are both pretty low. Basically on this diet, the more protein and fat he can get, the better. A main example of the switch was making him sausages or eggs every morning for breakfast instead of cereal.

In the first two weeks of the diet, I'd say that his average number of seizures dropped to about 8 a day, but again it was inconsistent. By the third week we had some really good days, more like 3 or 4 seizures. Unfortunately, this was also a time in our lives when we needed to focus on some other things, so I stopped tracking everything for a week ( I also needed this mental break from the up and down), and I'm afraid that we relaxed on the diet a bit. This week I started work and my husband is home with the boys in the morning, and we didn't communicate well enough about what exactly he should be eating. On Tuesday (I think) I sat down on the computer and developed a log that I could print out that would simplify keeping track of what he was eating and his seizures, and that has helped a lot. So, that's where we are at this point. According to the past couple days we're back to averaging about 9-10 seizures.

A lot of them are happening either when he's falling asleep, or in his carseat. Which makes me feel better because I'm not worried about his safety in either case. We've noticed that his seizures happen when he enters into a relaxed half-awake or drowsy stage, and if we can keep him out of this daze by keeping him engaged then he doesn't have the seizures. If someone sits next to him in the car and keeps talking to him and keeps him entertained then he doesn't have nearly as many. Sometimes it's very hard to avoid this stage, for instance when he's falling asleep. Other examples of when he's likely to have seizures is when he's being read to, or watching TV. We'll keep trying to reduce TV time (if he was an only child I'd just keep the TV off, but that's much harder with a 6 year old around...and I don't want his brother to feel  "punished" by Brendan's restrictions). The reading is harder, because we don't want to restrict it and it's really one of this favorite things to do. Again, if we keep trying to engage him and keep him talking while reading than it helps.

A few random notes: we cut out apple juice for a while, because that has been the one constant in Brendan's diet, but didn't see a huge difference so we've gotten lax again...still, it might be worth revisiting. Also, I had been giving him 100mg of B6 each night for the first two weeks, but missed a few nights and didn't notice a difference so I stopped. Then, last week he started sleeping poorly, just tossing and turning a lot and calling out in his sleep. Remember, this coincides to having a lot less time with me during the day (which overall he seems to be adjusting to with very little problem) so it's not conclusive, but I started the B6 again (which is supposed to help with sleep) and he's slept a bit better the past two nights. I'll keep it up and try to report back about whether that is helping. Once we start holding some other variables steady, I'd like to add melatonin into the mix to see if that helps his sleep and maybe even his seizures.

Last complaint: Although we liked the neurologist that we saw most recently, we cannot get his office to call us back or even call in a prescription. I've been told that his regular secretary is on maternity leave, but whatever measures they've taken to cover for her are really failing, and I'm sick of it. Back in February we'd set an appointment at the nearby children's hospital with a neurologist that couldn't see us until July, and I never cancelled that appointment even when we got in with the other guy. Now, I think we'll keep that appointment and see what we think of this other person, just in the hopes that we can keep better lines of communication open. My mom has also gotten some information about more wholistic pediatricians and neurologists, so I'm excited to follow up with them.