can any one offer help
This is a long story, please take the time to read. our 4 year old daughter has been recently diagnosed with crohns. she was constipated for awhile and had very hard stools. she was lathargic and very run down, pale, and complaining of stomach pain. fevers and vomiting were a daily occurance. we took her to the ER and they ruled out appendicitis and lead poisoning. we took her to a peds GI specialist and was treated for the constipation with 255 grams of miralax in 64 oz. of gatorade. continues on daily miralax. they also took some blood work and found out she was iron deficiant annemic and lactose intollerant. she takes iron supplement and digestive advantage for lactose intolerance daily. endoscopy was performed shortly after where they found granulomas in her esophagus, a small hernia at the rim of her esophagus. said she had reflux and started her on prevacid. next she had barium swallow with small bowel follow through x-rays done. "abnormalities" were found there. next they performed colonoscopy and found granulomas in her large bowel. She was diagnosed with CD and at this point had a sed rate of 42. she started taking pentasa 500 mg 2x a day. sed went down to 32 in a month, increased pentasa to 3x a day. sed rate went to 28 in two weeks. vomiting continued so they added zantac for the reflux she had 2 good days then back to vomiting daily. labs rechecked and sed rate back up in 30's. started on entocort 6mg daily. vomiting stopped immediately but now getting strange rashes. first on cheek, then one on her stomach, and now her right elbow and knee for past 4 days and today on right butt cheek. Doctor admits she is a very difficult case and doesnt fit the textbook crohns patient but we really wnat to know if anyone out there has had similar experiences. We feel like we're all alone and things just don't add up.