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Update on Visit to Cincinnati Children's Hospital
Well, Lucas has finished up his testing to diagnose his
malabsorption/failure to thrive/etc. at Cincinnati Children's. It was a much more relaxed time than any of his other surgeries or procedures. They actually had gowns that fit him! He doesn't have cystic fibrosis, celiac disease, or allergies (except for the ones we already knew about). What he does have is a pancreatic problem. His pancreas does not produce enough (well virtually none) amylase, which breaks down starch. Since starch is a major part of virtually all diets, and even elimination diets have starch (think about rice), we never could have determined this without the duodenal biopsy. I shudder to think what it would have been like to use the elimination diet and still have a sick child. So, we are working on his diet. He's eating dairy, meat, vegetables, fruit, and other simple sugars (lots and lots of suckers). We might try enzymes if there is one that isn't derived from pork (he's allergic). I am going to look at Atkins' info and recipes for a few more ideas. People are really going to find me strange ("No, he can't have the "healthy" goldfish. Let him have that sucker instead.") but I don't really care. Anyway, I thought that those of you who remember might want to know. We went in expecting him to have a relatively common, controllable disease and wound up with a very rare controllable metabolic problem. I've learned that if something seems wrong with a diagnosis, go ahead and get a second opinion. Kate R. P.S. He's doing so much better that he is actually potty training himself. WOOHOO! |
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Update on Visit to Cincinnati Children's Hospital
"Kate R" wrote in message
om... Well, Lucas has finished up his testing to diagnose his malabsorption/failure to thrive/etc. at Cincinnati Children's. It was a much more relaxed time than any of his other surgeries or procedures. They actually had gowns that fit him! He doesn't have cystic fibrosis, celiac disease, or allergies (except for the ones we already knew about). What he does have is a pancreatic problem. His pancreas does not produce enough (well virtually none) amylase, which breaks down starch. Since starch is a major part of virtually all diets, and even elimination diets have starch (think about rice), we never could have determined this without the duodenal biopsy. I shudder to think what it would have been like to use the elimination diet and still have a sick child. So, we are working on his diet. He's eating dairy, meat, vegetables, fruit, and other simple sugars (lots and lots of suckers). We might try enzymes if there is one that isn't derived from pork (he's allergic). I am going to look at Atkins' info and recipes for a few more ideas. People are really going to find me strange ("No, he can't have the "healthy" goldfish. Let him have that sucker instead.") but I don't really care. Anyway, I thought that those of you who remember might want to know. We went in expecting him to have a relatively common, controllable disease and wound up with a very rare controllable metabolic problem. I've learned that if something seems wrong with a diagnosis, go ahead and get a second opinion. Kate R. P.S. He's doing so much better that he is actually potty training himself. WOOHOO! It really sounds like you are finally getting the answers your little guy needs! Atkins may be very helpful to you as it nearly eliminates carbohydrates, which includes sources of starch. So, you ought to be able to find loads of great recipes. You might like to have a look at the newsgroup alt.support. low-carb - we've gotten loads of great recipes through there. -Aula, doing the Atkins thing with good results --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.510 / Virus Database: 307 - Release Date: 8/14/03 |
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Update on Visit to Cincinnati Children's Hospital
Kate R. ) wrote:
What he does have is a pancreatic problem. His pancreas does not produce enough (well virtually none) amylase, which breaks down starch. WOW. I am so happy you guys have an answer, and that it's something that can be handled. What an interesting case. I wonder if some of the research that's currently being done on diabetes will end up being useful for your son's condition as well. --Helen |
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Update on Visit to Cincinnati Children's Hospital
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Update on Visit to Cincinnati Children's Hospital
Hey Kate, does his condition have an official name or label? Am
interested in reading more about it and would like to look it up. Mary G. |
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Update on Visit to Cincinnati Children's Hospital
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Update on Visit to Cincinnati Children's Hospital
I'm getting the impression
that this is a *very* rare condition indeed. Possibly. I found an interesting site discussing pancreatic diseases in children, maybe you've seen it already: http://medicine.ucsd.edu/peds/Pediat...ncreatic%20Dis eases%20in%20Children%20Ped%20Clin%20NA%20Feb%2019 96.htm or http://tinyurl.com/kaso which states: "Congenital Amylase Deficiency The existence of a true isolated pancreatic amylase deficiency is questionable because the strict criteria for the diagnosis were not fulfilled by the reported cases. [50] [82] [87] , [90] The strict criteria include: age of more than 1 year; clinical intolerance of starch-containing food; peak amylase concentration by pancreozymin stimulation, less than 1 standard deviation below the mean for the patient's age; normal lipase, trypsinogen levels, and pH in the duodenal fluid after pancreozymin-secretin stimulation; normal histology and brush-border enzymes of the intestinal mucosa; abnormal starch-loading test in the presence of a normal glucose tolerance test; symptomatic improvement on starch-free diet; normal sweat test; and no other typical features of known hereditary pancreatic insufficiency syndromes. Several of the described cases may represent developmental delay in amylase secretion, and in some, known pancreatic or small bowel disease was not ruled out." Apologies if I've quoted a bit that's not actually relevant to your son's condition -- this stuff is rather confusing! There's another interesting site at http://www.naspghan.org/sub/Malabsorption.htm . --Helen |
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