Brayden is not gaining weight.
This is a problem. As I said before, if Brayden does not gain weight, he may be pulled off the ketogenic diet. The ketogenic diet has been life changing for his seizure control.
Trying to figure out why he is not gaining weight has been a puzzle, despite increasing his calories several times. We have noticed that Brayden has been having 2-3 bowel movements a day, some days even 4-5. Several times it is quite oily (I know this is too much information about poo).
I called the pediatrician to talk about it. She immediately said pancreas. I asked her to call Brayden's GI doctor. The pediatrician talked to the GI doctor and I talked to both of them again, as well as the nutritionist.
Brayden technically has chronic pancreatitis. His lipase levels vary from high to extremely high but there have been no other problems. The pancreas sends out enzymes that help breakdown carbs, proteins and fats for digestion and absorption. If Brayden's pancreas is not working properly, then it may be a problem of his body not absorbing the food.
What does all that mean? I am not sure yet. Two things that we are looking into is collecting stool samples over a three day period (fun, right? do I have volunteers?). I am waiting to get the lab orders to find out exactly how they want to do it. The GI doctor is looking into giving Brayden pancreatic enzymes, which apparently are hard to do via a j-tube.
Gaining weight is needed and properly working pancreas is needed...
2 comments:
Did Brayden used to have a g-tube or has he always been on a J-tube. From reading other families stories (Segev has a g-tube) I have seen a trend towards seeing the j-tube replaced for a "G", solving some absorption problems.
I have used, prescribed for patients and give segev digestive enzymes, they work wonderfully in helping to digest especially oils.
Is his diet LCT or MCT? MCT can be more difficult on the digestion as well. Does he get 4-5 keto meals a day? Spreading it out may be help. Even something as simple as ensuring that the food is not cold can be of use.
For Segev I crush the digestive enzyme pills to a fine powder, just like his other meds and it passes through the feed tube quite easily.
Best to give them always AFTER the meal.
Well, I hope that these tests give you the answers that you need. I can understand why you would be hesitant to take him off the keto diet since it has done wonders for his seizure control. Praying the solution is a simple one that just hasn't been tried yet!
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