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mcarter127
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Primary Pancreatic Insufficiency/ Schwachman-Diamond Syndrome
mcarter127
member
Does anyone have any experience with this? We are just waiting for some test results to confirm everything but our pedi is pretty sure that DS has this. I hadn't heard of PPI in kids that do not have CF but apparently it can happen. DS started having issues with FTT around 5 mos & has had chronic, greasy diarrhea (upwards of 30-35 times a day) for about 18 months now! I don't know why it has taken soooo long to get a dx, we're finally with a new pedi who suggested this be evaluated!
Im looking for any tips on enzyme therapy & just management of this disorder. He also has SPD (& is being evaluated for ASD although we don't have a formal dx yet) & has serious issues with different textures. I know the enzymes come in capsules that can be opened & placed on a spoon with baby food. I am not sure this will fly with him because he's gonna notice the different texture within the baby food & the refuse it. Does anyone have any tricks for getting around this?
Our heads are spinning right now but hopefully we're getting closer to finding answers! Thank you for reading!
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Re: Primary Pancreatic Insufficiency/ Schwachman-Diamond Syndrome
We're on enzymes due to PI related to CF. Our LO has a feeding tube and an oral aversion, so we open the capsules, crush the enzymes with a mortar & pestle and put them in his formula.
Good luck!
Also, different enzymes have different sizes inside. Creon is pretty small, Zenpep is pretty big.
Thank you so much, everyone! We did get some results back yesterday but not all yet.
Erkie- I'll send you an email, thank you!