ChaufferMom1
New member
Hi Heatherrose and Edna;
Wow I thought my daughter was the only one with just originally Amylase deficiency! I wish you both the best of luck with the scope today Edna, and with your genetic testing Heatherrose. Anyway, Amber is now 17, and was diagnosed with pancreatic Amylase deficiency 2 years ago through pancreatic stimulation tests while being scoped with both upper and lower scopes. (I wont go into the fun I had to go through to get even that much accomplished, since I had a "female teenaged dancer, so her pain, bloating, large weight loss, and everything else must be anorexia or psychological") Repeated tests using different labs confirmed the Amylase deficiency results. This past summer Amber started showing signs of Lipase deficiency (floating greasy stools) and we increased her enzymes, then again this past month we had to increase her enzymes and right now we are trying a different brand to see if that will help. I requested the initial trial of enzymes. (her GI Doctor says he usually looses CF patients that he diagnoses to the Pulmonologist so he does not have tons of experience in that area) She has to fight to keep her vitamin D and K levels above normal. Her rheumatologist prescribes 50,000 IU of D per week for a month about every 2 to 3 months. When these vitamin levels fall, she also has bloody stools and the smallest cut can bleed forever, she also was given a diagnosis of Fibromyalgia until we got her Vitamin D levels into the upper mid range. But she can tell / feel when they get low with no problems! She had one normal sweat test which I have dismissed as not hers, since the report also came with bloodwork that she did not have done. I had been fighting to get genetic testing done with the insurance company that we had, but our insurance just got switched this January to a different HMO so I get to start all over again.....(oh Fun!). Amber also has chronic sinusitis, GERD, Chronic H-Pylori Negative Gastritis, chronic constipation, Arthropathy of an unknown cause(spine, hips and knees), Asthma, Hyperinflation of the lungs, Nasal cysts, and has been battling recurrent bronchitis for the last 3 months. Her first scope did show moderate Disaccharide deficiency, but the rest have been normal. I have since learned that this can occur for any reason, even a cold which can irritate the intestinal lining can cause a deficiency there, so Amber just uses lactaid or drinks lactose free milk. I have also been told by several different people that the pancrease does not flip flop and make enzymes after it has stopped. I would REALLY love to know the results of your genetic tests. Also Amber had a ton of problems with Hypoglycemic types of health issues until we started giving her enzymes, Her endocrenologist suggested increasing the doseage and this also helped her tremendously, so it is a really good thing your Doctor put your son on the enzymes so rapidly.
Debbie
Wow I thought my daughter was the only one with just originally Amylase deficiency! I wish you both the best of luck with the scope today Edna, and with your genetic testing Heatherrose. Anyway, Amber is now 17, and was diagnosed with pancreatic Amylase deficiency 2 years ago through pancreatic stimulation tests while being scoped with both upper and lower scopes. (I wont go into the fun I had to go through to get even that much accomplished, since I had a "female teenaged dancer, so her pain, bloating, large weight loss, and everything else must be anorexia or psychological") Repeated tests using different labs confirmed the Amylase deficiency results. This past summer Amber started showing signs of Lipase deficiency (floating greasy stools) and we increased her enzymes, then again this past month we had to increase her enzymes and right now we are trying a different brand to see if that will help. I requested the initial trial of enzymes. (her GI Doctor says he usually looses CF patients that he diagnoses to the Pulmonologist so he does not have tons of experience in that area) She has to fight to keep her vitamin D and K levels above normal. Her rheumatologist prescribes 50,000 IU of D per week for a month about every 2 to 3 months. When these vitamin levels fall, she also has bloody stools and the smallest cut can bleed forever, she also was given a diagnosis of Fibromyalgia until we got her Vitamin D levels into the upper mid range. But she can tell / feel when they get low with no problems! She had one normal sweat test which I have dismissed as not hers, since the report also came with bloodwork that she did not have done. I had been fighting to get genetic testing done with the insurance company that we had, but our insurance just got switched this January to a different HMO so I get to start all over again.....(oh Fun!). Amber also has chronic sinusitis, GERD, Chronic H-Pylori Negative Gastritis, chronic constipation, Arthropathy of an unknown cause(spine, hips and knees), Asthma, Hyperinflation of the lungs, Nasal cysts, and has been battling recurrent bronchitis for the last 3 months. Her first scope did show moderate Disaccharide deficiency, but the rest have been normal. I have since learned that this can occur for any reason, even a cold which can irritate the intestinal lining can cause a deficiency there, so Amber just uses lactaid or drinks lactose free milk. I have also been told by several different people that the pancrease does not flip flop and make enzymes after it has stopped. I would REALLY love to know the results of your genetic tests. Also Amber had a ton of problems with Hypoglycemic types of health issues until we started giving her enzymes, Her endocrenologist suggested increasing the doseage and this also helped her tremendously, so it is a really good thing your Doctor put your son on the enzymes so rapidly.
Debbie