I've been lurking for a few weeks but figured I may as well introduce myself. I have a daughter that recently turned 8 and has been suffering from GI issues since birth. As a newborn she had constipation issues which quickly turned to diarrhea issues. She was labeled FTT within a few months. We were finally referred to a GI in Tampa when she was about 4. She had some labs done which were mostly normal (eosinophils were very high and albumin was low) and then her first EGD/colonoscopy. Everything came back clear and her symptoms seemed to come and go. Some random vomiting, dizziness and headaches, stomachaches, and the neverending diarrhea. We decided to wait and see, hoping things would just go away and they did....temporarily. Then she developed reflux, which quickly became so severe that she was getting sent home from school daily. She once again was given the FTT diagnosis. Her GI wanted to do another EGD/colonoscopy which only showed mild gastritis. She finally prescribed some Prevacid and the reflux subsided. The diarrhea, however, became pretty intense and she was soon having several accidents a day. She had Prometheus testing done and was shown to have genetic markers for Crohn's Disease. That's the first I'd ever heard of this disease, but once I researched it it did seem to fit. I decided to get a 2nd opinion and found an amazing doctor in Orlando.
This doctor ran a million labs and stool tests, all normal. I was shocked. He then had her do an MRI which showed possible thickening of the TI but nothing definitive. At that point he decided she suffered from IBS and gave her Hyomax to deal with the stomach pains. That provided very little relief. He also made a Behavioral Health referral (which I haven't acted upon just yet). Due to the severity of her symptoms and small size he decided to do an EGD/colonoscopy just to be thorough. Visually things looked normal and we were told that she had IBS and to come back in a week for biopsy results. Interestingly, she was found to have bacterial overgrowth, focal cryptitis, a patchy increase in eosinophils in all the colon biopsies, and the stool sample taken was said to have "few polys". The GI said these results weren't a "slam dunk" for any diagnosis and was very careful not to throw out too many medical terms. Because I'm somewhat untrusting of doctors I asked for all the reports so I could study them myself. He said if her fecal calp test came back abnormal he'd feel more confident that this was IBD. Because it didn't he says it is just another piece to the puzzle.
Amazingly, the colonoscopy prep seemed to help her tremendously and treatment was put on hold. Symptoms returned a few days later and she was started on a 2 week course of Clindomycin (antibiotic). She finished that up last week and has now come down with the flu (although very minor because she started Tamiflu almost immediately). I'm hoping the recent diarrhea is flu related. If it continues I was told to call the GI and a 5-ASA medication would be prescribed. She has another appointment in about 5 weeks to re-evaluate symptoms and check her growth.
I'd love to hear what you all think about the recent EGD/colonoscopy findings. My daughter is 47 inches tall, 43 lbs, and very lean and muscular. She's a competitive dancer and amazes me with her strength and determination daily.
This doctor ran a million labs and stool tests, all normal. I was shocked. He then had her do an MRI which showed possible thickening of the TI but nothing definitive. At that point he decided she suffered from IBS and gave her Hyomax to deal with the stomach pains. That provided very little relief. He also made a Behavioral Health referral (which I haven't acted upon just yet). Due to the severity of her symptoms and small size he decided to do an EGD/colonoscopy just to be thorough. Visually things looked normal and we were told that she had IBS and to come back in a week for biopsy results. Interestingly, she was found to have bacterial overgrowth, focal cryptitis, a patchy increase in eosinophils in all the colon biopsies, and the stool sample taken was said to have "few polys". The GI said these results weren't a "slam dunk" for any diagnosis and was very careful not to throw out too many medical terms. Because I'm somewhat untrusting of doctors I asked for all the reports so I could study them myself. He said if her fecal calp test came back abnormal he'd feel more confident that this was IBD. Because it didn't he says it is just another piece to the puzzle.
Amazingly, the colonoscopy prep seemed to help her tremendously and treatment was put on hold. Symptoms returned a few days later and she was started on a 2 week course of Clindomycin (antibiotic). She finished that up last week and has now come down with the flu (although very minor because she started Tamiflu almost immediately). I'm hoping the recent diarrhea is flu related. If it continues I was told to call the GI and a 5-ASA medication would be prescribed. She has another appointment in about 5 weeks to re-evaluate symptoms and check her growth.
I'd love to hear what you all think about the recent EGD/colonoscopy findings. My daughter is 47 inches tall, 43 lbs, and very lean and muscular. She's a competitive dancer and amazes me with her strength and determination daily.
Its so hard watching our kids suffer. My 11 year old has ulcerative colitis. She was unofficially diagnosed with Crohn's in 2009 at 8 years old. Her diagnosis was changed in Mar 2012 to UC. She has been through so much as well. Like your daughter, Devynn had severe constipation as a baby and young child, which changed to diarrheah. At one point she was having several accidents a day. She was started on Pentasa (ASA drug) at first and had amazing results, but after a death in the family she went into a flare (2011). Her meds were changed to Mezavant which didn't work and then finally Sulfasalazine in Nov 2012 which is working and she is feeling much better. 
