Pediatric Crohn's Flare?

[Four4ns]

My 13 year old son (64 pounds) has had GI issue since birth. Just diagnosed October 2008. Was off his medicine Pentasa, waiting to start Entocort. Colonoscopy scheduled prior to starting Entocort. Three weeks after stopping Pentasa he started having GI issues, headache ranging from just there to pounding, low grade fever 99.2 - 100.4. GI doctor is a one man show. Would not even see him prior to scheduled colonoscopy. Didn't call to check up on him or anything, wouldn't return my calls or answer questions. He can't go to school. It's been 19 days now, colonoscopy was just moved up to this Monday. Took him to Children's Hospital Of Philadelphia emergency room last week hoping to get somewhere. Blood work didn't indicate flare, so they sent us home. Second option with CHOP scheduled for June 1. Looking for advice.

 

[jamie2462]

Look for more opinions. Someone will eventually help. I had to go through 6 ER docs before finally getting in to see a good GI. Keep pressing them. Your son has a right to medical care and when it hurts like I know it does, it is very frustrating when they won't listen, but keep trying. Get him in to see a Good GI, and ignore this other one...he obviously is not the right doctor for you and your son.

Hoping for the best for you both.

 

[Four4ns]

Thanks!

 

[kello82]

four4ns--sent you a pm!

 

[My Butt Hurts]

Why did he have to stop Pentasa? Was it working? Why are they waiting for entocort?
Goodo luck at the colonoscopy. Let us know how it goes, and welcome!

 

[Guest]

good luck - i hope things get sorted for your little boy very soon!

i would say change GI's at the first possible chance.. and if that's not an option due to distance or whatever, threaten then carry through a complaints procedure on this guy. children presenting with such symptoms should not be neglected like this

 

[Four4ns]

Dismissed prior GI doctor, he was on vacation and didn't have anyone cover for him. First available Children's Hospital Of Philadelphia appointment is June 1st. Prior doctor is now calling to check up on him, little too late for that. Liver function is abnormal and they want me to have a liver ultrasound, followed by additonal blood work.

Pentasa controlled his symptoms great, however wasn’t gaining weight and hasn't for almost 2 years. CHOP put him back on Pentasa.