Owen Update - Ketogenic Diet

 I'm still recovering from yesterday. Owen's appointment was scheduled for 2:00. My goal was to leave the house at 10:30. We actually got out of the house at 10:45, which was within my allotted overage allowance. We hit the roundabout and Rod automatically turned right, which is the correct direction for the hospital, but alas NOT the correct direction for the cheap gas station we planned to fill up at. So, we turned around and headed back to the gas station (the gas station on the reservation near us is 20 cents per gallon cheaper than anywhere else). We get to the roundabout again and realize that Rod forgot his wallet. Instead of turning off at the gas station, we go all the way home and get the wallet. We finally got back on the road 22 minutes later, or 37 minutes late if you add in the 15 minutes from the beginning.
 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.

 Owen will have to be hospitalized for 3-5 days (according to the Keto team, other parents have said 4-7 days) to start the diet. The diet induces a huge change in metabolism, which can have several side effects that need to be monitored closely. It looks like we will be going in either July 22nd or 29th. We need to get back to them in the next few days about which date will work best for us.
 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.

 Tomorrow Owen and I get to go to the lab as soon as it opens to get a fasting blood draw to check cholesterol and vitamin/mineral counts so they have a baseline before he starts the diet. The Ketogenic Diet is not a balanced diet and he will need to take supplements and have his levels checked while he is on it to make sure he doesn't get dangerously low in minerals or too high on his cholesterol counts. The good news is that we can also get his med levels checked now and not have to go to our normal appointment on the 13th, saving us from having to drive to Seattle two days in a row.

 The other good news is that our Keto team seems to be pretty progressive about instituting the diet. I will be sending them 3-5 days of Owen's normal diet (with measurements 2 oz milk 1/2 cup Grape Nut Flakes) and they will determine his calorie counts based on what he is currently eating. Some teams limit calories to 75% of normal, ours doesn't. They also don't require a fast before starting the diet. We will just feed him low carb foods before he goes in. The dietician was also taking notes on the Keto type items we've already gotten Owen to eat. They plan on tailoring his diet to things he already likes and eats easily. I've heard horror stories about the things other teams expect the kids to eat. It's nice to know that our team knows that Owen isn't just going to eat whatever is put in front of him. We've had lots of problems feeding Owen in the hospital before due to his feeding issues and I was more than a little worried about trying to feed him Keto foods in the hospital.
 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!