Hi! My son has recurrent episodes of severe vomiting and diarrhea (5 bouts in 9 months with 2 hospitalizations; and one paralytic ileus). His problems started when he began to eat solid foods. He was very picky and wouldn't eat much of anything except breastmilk despite being hungry. By the time he was 14 months old, he was barely 16 pounds, with constant, very smelly diarrhea. His hair was red and he was boney except for a distended belly. He was hospitalized for failure to thrive. Celiac and cystic fibrosis were both ruled out (as were a ton of other things). They did discover exocrine pancreatic insufficency. After we got him on the right amount of pancreatic enzymes, things improved. He began to put on weight. He now weighs almost 30 pounds at 3 and a half years old. But these bouts of diarrhea and vomiting are so troubling. They ruled out Shwachman-Diamond Syndrome, and the next thing to rule out is Crohn's.
He has recurrent episodes of mouth and tongue ulcers, anal tags and tenesmus, recurrent sinus infections, episcleritis, and low blood sugar. He goes through periods (weeks long) of massive eating, then anorexia (because his tummy hurts for weeks). He also has periods of inactivity lasting days or weeks, where the only thing he feels like doing is sitting or lying around (unusual for 2 & 3 year olds).
The doctors seem to alternately be very concerned (when he is very sick) to dismissive inbetween. Our last hospitalization was so difficult for us both. 3 days with no food (except IV) at all because of the ileus, AND a catherization because of atonic bladder (worst 20 minutes of our lives). He also has recurrent elevated liver enzymes, but not bad enough to suspect that's causing the problem (and his hep tests were all negative).
If anyone has something to offer on preschool Crohn's (does this even happen?) or the process of testing, please let me know. Thank you all so much.
Meredith
Charlotte, NC
He has recurrent episodes of mouth and tongue ulcers, anal tags and tenesmus, recurrent sinus infections, episcleritis, and low blood sugar. He goes through periods (weeks long) of massive eating, then anorexia (because his tummy hurts for weeks). He also has periods of inactivity lasting days or weeks, where the only thing he feels like doing is sitting or lying around (unusual for 2 & 3 year olds).
The doctors seem to alternately be very concerned (when he is very sick) to dismissive inbetween. Our last hospitalization was so difficult for us both. 3 days with no food (except IV) at all because of the ileus, AND a catherization because of atonic bladder (worst 20 minutes of our lives). He also has recurrent elevated liver enzymes, but not bad enough to suspect that's causing the problem (and his hep tests were all negative).
If anyone has something to offer on preschool Crohn's (does this even happen?) or the process of testing, please let me know. Thank you all so much.
Meredith
Charlotte, NC
