Posted By Posting
May 07, 2010
thanks emibug! or anyone w/answers!
thanks for your recent reply re: my dd libby and repeating endoscopy... i'll watch the casein better...

we had skin prick testing at allergist--only saw ragweed, cat, dog, hamster ALLERGY

have had some blood work for some allergies, metabolic--but HONESTLY not certain of ALL that's been checked! do you know WHAT SPECIFICALLY to ask for so we're looking into EVERYTHING??

what genetic testing can be done?

what metabolic tests?

what would blood,urine, stool samples check for? intolerance or just allergy?

i've seen websites for actual "food intolerance tests" where you send in a blood sample and they check for hundreds of food reactions. is it real? legitimate? valid? or is the gold standard elimination diets and challenges?

with endoscopy-can they "see" with their eyes inflammation--or can it be microscopic--need biopsies for that?

looking at your dd's profile can you answer: what's functional constipation?

how did you knoe she has dge?

how know she has inflammation of sm. intestine?

how know she has parasites, bacteria in small bowel?

what is CSID? THANKS for sharing and helping!!! just wondering how much testing we should do/put her through, how far to travel, etc...

some people tell us go to: NYU (dr joe levy), Mt.Sinai in NY(d)r hugh sampson, cincinatti hospital, denver STAR center team, Boston hospital for motility, richmond...AAHH!!

WHERE and WHO will have the anwswers for her and us??!! THANKS AGAIN!

May 07, 2010
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
Ohhh, if you can get into Boston Childrens' Hopsitals motility clinic, I've heard they are one of the best in the world at what they do. They run neck and neck with the motility center for peds at Nationwide Chidlren's hospital at Columbus, Ohio. That's where we went. It had a shorter wait time or we would have gone to Boston.
May 07, 2010
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i am not really sure of specific tests for genetics or metabolic (i know that a Basic metabolic panel is usually run before all others) but it might be something i thought you could ask your dr. about; if it might be relevant for your dd's case.

the same for blood and urine, your dr could decide what is relevant, i'm sorry i'm not more help in that instance. as for stool they can check for parasites and certain and specific degrees of malabsobtions. even if a little one is constipated malabsobtion of nutrients could be a problem.

as for the websites with "food intolerance tests" i was always skeptical about them but a few moms in the past here have sent in stool samples and got results returned to them (i can not say if it it is legit or not). BUT it came out of their own pockets and sometimes insurance reimburses. i have no idea if they tell you actual reactions or not but i have always found in research intolerance are best handled with eliminating the food suspected then challenging it at a later time. this has just been my experience.

and yes, with an endoscopy they can actually see inflammation with their eyes, it's just like looking through a camera. there is also inflammation that can't be seen and needs microscopic evaluation via biopsies. Emily in her second EDG, age 2.5, had "perceived" areas of inflammation and biopsies confirmed damage. Her first EGD showed no visible damage and biopsies showed mico damage (she was on H2 blocker at this time, age 10 months).

functional constipation is when the body is not able to relieve itself of stool and there is no physical or psychological cause. the bowel is healthy but no reason is found for it to not work properly.
br/>Emily was originally diagnosed with pelvic floor dysfunction (age 7 months), where she was just not strong enough to push out stool because of weak muscles in pelvis. as she got older and we changed her diet she had chronic severe diarrhea, after that was resolved (over 6 months ago) she had dealt with diarrhea for so long, her pelvic muscles were still not strong enough to push out solid stool. it caused what the doctors called functional constipation. a colonoscopy (age 2) showed her colon was functional.

we know from a upper GI barium swallow and Small bowel follow through that she had DGE. The test also showed inflammation of the small intestine. the first and second EGD showed inflammation in the duodenum and the colonoscopy showed inflammation in the lower small intestine. it was determined it was from a non specific cause. we also knew she had DGE because she would spit up or puke things that she ate many many hours earlier. we never had a milk scan b/c it was just accepted that is what she had.

we did not know for sure she had any parasites. 3 stool tests came back negative for parasites as well as for a couple other things. we had a second opinion with a new GI and he suggested we trial the meds on her anyway b/c parasites often do not show in tests and she was just sick for no reason anybody could find. we did 2 courses of alinia and emily still had bloating, increased reflux, fatigue, weight loss and diarrhea. so we also gave her a med Flagyl for small bowel bacterial overgrowth. it is a nasty antibiotic but after the course it seemed to alleviate her "cycles" of symptoms.

we left off with the GI on very possible IBD or something autoimmune, i think it has been over 6 months since her last flare of these symptoms but we were told this was not a quick fix and it could come back at any time- but we are enjoying it and treating it like a quick fix, kwim? lol

oh and CSID is congenital sucrase and isomaltase deficiency. it was discovered during emily's first EGD in an enzyme panel we did not know if it was acquired or inherited. it was suspected as the cause of her diarrhea but even after diet modification and her diarrhea changed from watery to thicker, her second EGD showed that her sucrase levels were within normal limits so it was judged to be acquired CS ID due to non specific disease.

i wish i could tell you were to go, but i only have limited experience with Cincinnati children's motility and Dr. M.L. was really very helpful in consultation of my youngest daughter. but it was on issues on potential colon surgery which Dr. L was "THE BEST", i don't know on other health issues though.
br/>now that i think about it a little more if i were you i might question the doctors about motility testing, and possibly a colonoscopy.
br/>i hope this has helped! if you have any other questions i will be happy to help :)
Check with your
doctor first!