Posted By Posting
Sep 16, 2009
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.
EGD results
Emily had reflux damage in all the biopsies taken from her esophagus, the mucus was probably there in part as a protection. Her stomach was actually fine. But the rough scalloping (it's supposed to be smooth) seen in EGD photos of her small intestine were actually nothing. The Dr. told me he would have put money on it she had celiac but aside from minor inflammation of unknown cause (she tested negative for everything they tested for) she does not have celiac or any other allergic or cancerous disease.

right now we are treating her for a possible parasite infection. this dr said it is possible that she could have them and not show up in stool samples. Since she cycles in how bad she feels which is common in (rare)long term parasitic infection (among lots of other things) so we will see how she feels after this course of Alinia. We are hoping this is the case and she will start feeling better soon, IBD is still up in the air though... We go back to the GI in 4 weeks for our next course of action.
Sep 16, 2009
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
What is their plan to deal with the damage in the esophagus? Are they increasing her dose, changing the meds..? How about the mucus? For Ryan, keeping the mucus out of his throat makes a night and day difference in his desire to eat and the gagging. Claratin did the trick for him.

Another thought... Ryan tested negative for wheat, glutton and celiac. However and I can totally tell if he has had bread, breading or regular lunch meat at school as he is a crank butt the next day. (I only give him Hormel Naturals- nitrate and glutton free at home). So.. my guess is that his GI track is sensitive to it but not allergic. Just a thought for Emily and certainly something worth trying with her

Sep 16, 2009
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
That was my question too Kat. I remember she was on carafate for a while, would they consider it again until the damage heals?

You must be relieved and frustrated at the same time. I hope she responds to something soon. HUGS

Check with your
doctor first!