Tuesday, June 4, 2013
Owen Update - Ketogenic Diet
You might have determined by now that I tend to be a bit of a perfectionist, well you can add in that I HATE to be late. Especially for professional appointments, like doctor visits. I always have to schedule extra room in my travel times for things like; detours, diaper changes, stopping for food, not being able to find parking in Seattle, etc. . We had used up all that time just getting out of the house. Luckily we were able to detour around the detour traffic, regular traffic was flying through Seattle, and we found a parking place easily. We still just barely got to our appointment on time, both kids needed diaper changes and neither had had time to run off any energy from the long car ride. One of the things I love about Swedish is that we always get in within minutes of our scheduled appointment times. We were called back right away and once we got Owen weighted and measured I was able to get diapers changed. Then we had an hour and a half long appointment. With two little kids who had been in a car for 3 1/2 hours. We knew the appointment was going to be long, but I had planned on the kids getting some running around time beforehand. As we were leaving, the receptionist thanked us for giving her some relief from her "baby fever". She thinks she can wait a little longer before she wants kids now. All thanks to us! Then, of course we got to put the kids back in the car for the ride home.
Due to Owen's prior feeding issues, they want a swallow study done before we start the diet orally. Oil is the worst thing to aspirate because it coat the lungs and the diet is mostly fat, so they want to make sure he isn't aspirating. What that means for me is that I get to spend my birthday in Seattle doing a swallow study. We haven't had good experiences with swallow studies, so I'm really not looking forward to this one. I also really, really don't want to have to put his feeding tube back in. We worked so hard to get rid of it. He's gone a year and a half without using the tube and hasn't had aspiration pneumonia. I'm hoping everything goes well, but swallow studies haven't been good to us so far. At Owen's first one the technician yelled at me to stop feeding him after one bite. We thought he was doing better at the second, but it still showed that he was aspirating everything except chilled purees. The 3rd consisted of Owen sitting in the chair alternating between screaming and refusing to open his mouth. We ended up leaving without getting the study done at all. I'm assuming he's doing fine, but we never have actually had a clear report to feed him orally. It just makes me nervous about what this is going to show.
Our team has found that 1/3 of their patients experience 90% or better seizure reduction, 1/3 experience 50-90% reduction, and 1/3 either don't have noticeable improvement or find it too hard to stay on the diet. We have about a 2% chance of more/different drugs helping. I think it is worth it to at least try the diet!