He is on 3 caps per day - one with each larger meal and none on snacks.
Problem is, we are seeing good things and bad things. His stool is normalizing and he gained a little weight in a short period of time on the enzymes. The bad part is something that probably isn't discussed here much, but my son has neuro-sensory issues related to Vitamin E deficiency. It's a very long story, but we finally got him to "sensory normalcy" recently by giving him rather high daily doses of Vitamin E. Each time we gave an increase (over a 8 month period) of Vit E his sensory issues would go haywire for 4-5 days and then there would be improvement.
After beginning the enzymes, he went haywire again and we thought it just meant that he was getting more Vitamin E due to better absorption and we dosed down the Vit E just a tad (nothing that would have made much of a difference). Well, over 2 weeks went by and he just worsened to the point where we were before we ever began Vitamin E. On Saturday I just couldn't take seeing him like that any longer and I stopped the enzymes - and within a few hours he had regained most of the progress that we had made.
We (his neurodevelopmental pediatrician and I) think there is something going on re: fatty acid oxidation/oxidative stress and that instead of better absorption of Vit E causing the neuro-sensory regression, it may have been the better absorption of fat that overwhelmed his system that even the high doses of Vitamin E couldn't protect from. It was amazing to see him recover so quickly.
Before I pulled the enzymes completely I considered just cutting back to 1/2 cap per meal, but the kid didn't have any control over his body or actions, and seeing regression like that is sad and made me worry that he wouldn't recover the progress we had made.
I'm thinking that his pancreatic insufficiency is not very severe and the amount of enzymes he needs is not as great as a severe case would need. He has never been a "failure to thrive", is taller than most his age and while very lean without a visible ounce of fat on him, he continues to gain weight. Prior to supplementation his fat soluble vitamins were in the low normal range but not below normal. So his pancreas must be working a little.
He's a tough case - but luckily he is the sweetest little cuddle bug and I love him to pieces!
Katie