heatherrose415
New member
I was year almosta year back. My son, Kaiden, has had FTT and greasy, bulk stools since he was born. They found out he had Pancreatic Amylase Deficiency at 15 months old. Which made them do a sweat test, two came back borderline. I pushed for the full ambry genetics test, which came back with no known mutations.
They started him off on Pancrease MT 10's, 1 with every meal.
that didnt work well, so they upped it to 2 every meal, which helped. but he still kept not gaining weight. almost a year later he finally gained 13 ozs. Then lost 1/2 a pound.
They said that sometimes kids produce to much stomache acid, which eats away at the enzymes before they do their work, which might be why he is having so much problems still. So now they are going to give him Zantac twice a day to see if that helps.
Where I am worried is they said he cannot have anymore enzymes because his lipase levels are normal, and with to much lipase, it starts to eat away at your intestines (or colon). He has been being seen at Lucille Packard Childrens Hospital. The last GI Dr. he saw there said that in 20 yrs, this is the first case she has seen like his. So he may need more amylase enzymes, but the enzymes are more geared towards ppl deficient in lipase and other enzymes as well, and since he doesnt have other deficiencies, the enzyme can cause more problems if given to much.
I hope I am making sense.
Basically the Zantac is our last option right now, he cant get more enzyme if thats what he needs.
so what would be next? feeding tube, G Tube? do any of you know? I just want to be prepared.
and I came here because its the only support and info I can find for Enzyme Deficiencies.
Thank you all,
Heather
They started him off on Pancrease MT 10's, 1 with every meal.
that didnt work well, so they upped it to 2 every meal, which helped. but he still kept not gaining weight. almost a year later he finally gained 13 ozs. Then lost 1/2 a pound.
They said that sometimes kids produce to much stomache acid, which eats away at the enzymes before they do their work, which might be why he is having so much problems still. So now they are going to give him Zantac twice a day to see if that helps.
Where I am worried is they said he cannot have anymore enzymes because his lipase levels are normal, and with to much lipase, it starts to eat away at your intestines (or colon). He has been being seen at Lucille Packard Childrens Hospital. The last GI Dr. he saw there said that in 20 yrs, this is the first case she has seen like his. So he may need more amylase enzymes, but the enzymes are more geared towards ppl deficient in lipase and other enzymes as well, and since he doesnt have other deficiencies, the enzyme can cause more problems if given to much.
I hope I am making sense.
Basically the Zantac is our last option right now, he cant get more enzyme if thats what he needs.
so what would be next? feeding tube, G Tube? do any of you know? I just want to be prepared.
and I came here because its the only support and info I can find for Enzyme Deficiencies.
Thank you all,
Heather