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- Sun Feb 25, 2007 11:13 pm
my daughter is 8 years old. shes complained of generalized stomach pains for several months. up until december she only had the pains a few times a week. i popped her with some tums. but the pains became more frequent to the point it was everyday. she also started having dizzy/fainting spells and she leaks urine from time to time. shes also been running very low grade temps between 99.6-100.6. her norm is 98.6. and shes lost about 7 pounds giving her a bmi of 10.
i took her to the dr who ordered a sonogram. turns out she was full of poop. we pushed fluid and fiber but she became anorexic and had virtually stopped eating. about a month ago she had a 5 day diarrhea spell. this time we were sent to a pediatric gastro dr
he explained that since she was SO backed up that basically each time her intestines contracted, all they were doing was squeezing the fluid out of her stool and it was passing as diarrhea. he gave us miralax with instructions to clean her out until she had watery stools and then use a daily dosage of it to keep her going.
we cleansed till we got watery stools. we were told it didnt need to be clear, just watery. i ended up calling the dr on-call because the watery stool she finally passed was the color of dark spinach. i was worried it was blood. the on-call dr assured me it was due to it being old stool and the color was okay.
the pains continued until she begged me to call the dr back. at this pojnt he scheduled an EGD and a colonoscopy. we all, dr included, are shocked by what we found.
the EGD showed edema and granularity in the 3rd portion duodenum as well as gastritis/erosions in both the body of the stomach as well as the fundus. she is being treated with a daily prevacid tablet for the gastritis but so far weve found no explanation for the edema and granularity.
the colonoscopy went very badly. he found several unspecified findings as well as some vascular malformations that he said were enlarged blood vessels. he made very little progress during the procedure because each time he moved the probe a bit further it was start to bleed. he only made it as far as the very left side of the distal transverse section before he was unable to go any further. he is unsure if theres are just many more of the vascular malformations or if the walls have narrowed or what.
after the procedure she passed about a litre of blood and was hospitalized for 4 days. she has since undergone a barium CT which showed everything to be normal. this was done within hours of the colonoscopy. 2 days after her release from the hospital, she underwent a small bowel series with barium, looking specifically for ileitis. everything in this test looked normal as well.
shes been tested for celiac, crohns, h pylori, a clotting disorder, and many many other things including cancer. all negative. her cdc showed she is slightly anemic and malnourished but thats to be expected since shes barely eating. one thing that struck out as a big red flag was her sed rate which went from 12 at admittance to 51 at discharge.
i have to call tomorrow to set up an appointment for an MRI to see if it will pick up anything on the malformations or to explain why the dr couldnt get passed that first corner during the colonoscopy. she will also have a KUB to make sure shes not getting backed up again even though shes still taking her daily miralax. and we're going to run another series of blood tests to see if her numbers are falling back into place and expecially to see if her sed rate has dropped.
sorry for the lengthy post but i wanted you to have as much details as possible so you can give a better opinion. ive included the images i was given from her EGD and colonoscopy in hopes that someone will maybe know wahts going on. any help would be gretaly appreciated. thanks in advance and if you are a medical professional, please feel free to pass along our story and photos to anyone you think might be able to help.
thanks again for any help or input.
| Dr. Chan Lowe
- Thu Mar 22, 2007 7:40 pm
Her symptoms are definitely perplexing. When I see EGD pictures like that it makes me suspicious for H. pylori infection causing the gastritis. H. pylori does not explain the colonoscopy findings.
I would be very suspicious of an inflammatory bowel disease, including Crohn's disease. How was she tested for Crohn's?
I am unable to comment on what the vascular structures may be due to. The MRI should be helpful. I would recommend it be done with IV contrast to better visualize the blood vessels.
Keep us updated. Best wishes.
- Fri Mar 23, 2007 8:10 am
thnak you SO much for your reply! she was tested for h pylori. it was negative. she was tested for crohns and celiac with both biopsies as well as with an ibd serology7. everything came back negative. shes also had an small intestine barium xray series looking specifically for ileitus. it came back normal. she also had the mri with and without contrast. it showed a normal study. she also had an additional abdominal xray. it showed a negative exam except for constipation in the left colon.
this also perplexes the gastro dr as well as all the other findings since she was so cleaned out for the colonoscopy and she takes 17 grams daily miralax so he's unsure why she would have constipation show up again so soon. weve since done another enema and shes still taking her miralax.
shes goes in again next tuesday, march 27th, for a repeat colonoscopy. this time he's going to use the smallest egd scope because he used the smallest colon scope last time and never could get around that first corner where all the malformations were found.
we also have an appointment for a 2nd opinion at georgetown university medical hospital on thursday, march 29th if we don't get any more answers during tuesdays colonoscopy.
thank you again for your response. i'll be sure to post an update as soon as i have one.