A little medical update on Brayden.
Kidney stones seem to not be a problem. Not sure what is going on yet but at least Brayden is not screaming in pain.
Seizures are under control. He typically has 1-2 major seizures a day (he probably has several little disappearing seizures but it is hard to tell). Since starting the ketogenic diet his seizures have gone from 5-10 seizures a day down to 1-2. He has also not been to the ER or needed any extra medication/intervention for large, out of control seizures since May. This is the LONGEST period of no ER ever for him! I am starting to miss the EMTs and ER staff...ha!
Pancreas seems to still be a problem. His lipase levels are still extremely high without much cause or reason to point to. He is now officially diagnosed with chronic pancreatitis. The good thing is that despite the high lipase levels, he does not seem to be in pain.
Vomiting is at an all time low. We are suctioning/pumping his stomach 3-4 times per day via his G-tube and it helps.
Brayden is still NOT gaining weight. He has been weighing in at 27-29 pounds for several months. No clue as to why he is not gaining weight but everyone is concerned and want him to get more calories.
He is fed through his J-tube (intestine) at 42 ml/hour over 20 hours in a day. They want us to increase the calories and the mls/hour to 50 ml/hr. We have NEVER been above 47 ml/hour. This might not seem like a big deal but his GI system cannot handle much. In the past, increasing the flow/hour has increased the vomiting and increased our visits to the hospital.
We are slowing moving our way up to 50 ml/hour. Adding one more ml per week to see how he handles it.
We are constantly adjusting his ketogenic diet...a little bit of this, a little bit of that...to help him get the proper nutrition.
In a nutshell, things are looking good...just not the weight gain and pancreas.