Wednesday, August 14, 2013

Neurology Follow Up -August 2013

 Today was our Neurology follow up in Seattle with Dr. Simon. Owen has actually gained a pound and grown almost an inch since he started the Ketogenic diet! Lack of growth is one of the most common side effects of the diet, so his growth is encouraging. It also means that his hunger IS probably due to lower than desired ketosis, not lack of calories. He seems to be doing better with the increased ratio. Now the whining seems to be more about not getting what he wants to eat than actual hunger.
 The bad news is that Owen has been bruising excessively. We had a bunch of labs drawn to see if we can find a reason why. Hopefully it is just anemia, since that is fairly easily treated with an extra iron supplement. Owen gets a lot of nuts and eggs for his protein and not very much meat. Dark green veggies are also hard due to carb restrictions and Owen's food preferences. The Charlie Foundation just put out a recipe for a keto green smoothie, so I plan to add that to Owen's diet plan as soon as I get a chance. Owen takes a multi vitamin, but he might need extra iron or have trouble absorbing enough from the multi (I have trouble absorbing enough iron from supplements, I have to use more natural sources to keep my levels up.) There are a few other possibilities for the bruising including a platelet disorder that can happen with the diet, but our Doctor says it would be extremely rare for Owen to have problems with that this early into the diet. It usually happens when kids are on the diet for more than the usual 2-3 years.
 Not wanting a repeat of this incident we decided to wait until our visit next month to check his medication levels. We don't want to make any med changes until we have his ratio leveled out anyway. It's so hard to tell how the diet is working with Owen since his "big" seizures have only been happening every 6-10 weeks right now and his small ones are so hard to distinguish from normal behavior. I'm not in a huge hurry to reduce medications yet.
 The lab tests went extremely well this time. We were going to try having Swedish Pediatrics lab do the test, but the lab is in another building several blocks away from the one his appointment was in and traffic was picking up in Seattle, so we decided to have the labs drawn locally instead. The fair is taking place this week near the location we usually use (closest to our house) so we stopped at a different location. I think we'll be going there most of the time from now on. The lab technician got Owen's vein the first time without any wiggling around (rare, as Owen got my crappy veins). We actually asked her for her schedule so we can come back when she is on duty next time. Now we just have to wait for the results.
Brenna may be the baby of the family, but she knows how to stand up for herself.






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