- Joined
- Mar 28, 2012
- Messages
- 16
Hi,
We are new here and pretty miserable and scared.
Our baby was dx'd with Crohn colitis based on clinical presentation and colonoscopy findings in Sept 2011 - at the age of 7 months.
Jack was born full term via planned c-sxn for breech and exclusively fed breast milk. He had lots of poos (7-8+ per day) and we were told this is OK as he was breast fed. He also had a diaper rash that just wouldn't quit. He started having spots of blood in his poo at age 4 months; mom stopped all dairy in her diet but he still bled and we were told not to worry by our (former) pediatrician. He was 75th percentile for weight/height until age 5 months, then dropped to 50th percentile. At age 6 mos, he stopped standing with assistance and developed fevers and was lethargic; our (former) pediatrician chalked it up to "a virus." At 6 mos 3 weeks, he was scoped and found to have multiple mucosal ulcers of the descending colon in a skip pattern; pathology showed severely active inflammation with crypt abscesses and mucosal erosions. Three days later, he stopped taking the breast and the bottle altogether and was hospitalized Oct 1 to 5 in NYC for dehydration. He received IV methylpred 1mg/kg and was sent home with an NG tube, which he pulled out within 4 days - around the same time he began accepting the bottle again. He was fed elemental formulas for 6 weeks, but symptoms persisted despite addition of Colocort enemas.
During this time, Jack never consumed anything other than formula, water or Pedialyte (thank God for Pedialyte). He didn't gain weight or grow in height.
We changed GI docs to a "big shot" at an academic center in NYC who specializes in IBD, and he increased the PO steroid and added sulfasalazine. Jack stopped growing altogether at around this time and had a few good days here and there but was mostly pretty miserable. His diaper rash - which never really got better - got a lot worse; it became a weeping, swollen bleeding mess. He cried every time we went near the changing table. We have tried EVERYTHING for the diaper rash to no avail; it only gets better when the colitis is better. Our GI doc just didn't get it; he actually told mom that she just needs to have a baby sitter come to give her a break once in a while! We begged for an alternative to prednisone and were started on 6MP 25 mg every other day on Jan 12.
Before starting the 6MP we scheduled a third opinion in Philadelphia and were advised to consider dropping the sulfasalazine as it can cause diarrhea and affect appetite. We did this and our NYC big shot fired us for failing to check with him first (he was very mean about it, too). The 6MP was increased to 15 mg per day in early Feb 2012, but Jack continued to do poorly. He decompensated to the point of no more bottles of anything and we were hospitalized in Philly from Feb 29 to March 9. During this stay, he was given IV methylpred 5 mg 2x day, Flagyl 90 mg 3 x day, and Pentasa 250 2x/day; of course, there is omeprazole for stomach protection. On day 4 of admission, he had an EGD and colonscopy - there were healing ulcers of the descending colon and one lesion at the splenic flexure and mild-mod inflammation (it was also day 4 of IV methylpred). The rectum appeared to be spared and the small bowel was clean. Pathology was... normal, completely normal. During that stay was also started on overnight enteral feeds of Elecare Jr 50 cc/hr and came home with an NGT and pump (and a good supply of extra NG tubes).
He did great - for a grand total of 10 days. No more diaper rash, actually eating some food, drinking his bottles, feeling great, 4 or 5 well formed poos, nice wet pee diapers, talking a lot. Then, the diaper rash returned on March 12 and it's been downhill ever since. For the past 4 days, he won't take anything by mouth so everything is via NG tube and he has become increasingly inconsolable with 10 BM/day. Interestingly, the poo is pretty well formed with not much blood (could it be C.Diff or the Flagyl at this point?). And, for the first time, his CRP is normal at 0.2 for two weeks in a row (was consistently 2.2+).
Now, our GI docs - who we trust, definitely get it and are trying their best - are talking about colectomy vs. Remicade if Jack doesn't start showing improvement on the 6MP. April 12 will be month 3 of 6MP and his 6TG levels still have room for improvement.
Has anybody else had a similar experience at such a young age? How does this play out? How many have opted for surgery at this point as opposed to Remicade?
Thank you for reading this very, very long post. We are freaked out and scared.
-Jack's Parents
Current meds:
6MP 17.5 mg/day
Omeprazole 4.4 mg BID
Prednisone 5 mg BID
Metronidazole 90 mg TID
Enteral feed Elecare Jr 50 cc/hr x 10-12 hrs (during sleep) 1 cc = 1 kcal
Bottle or NGT bolus 120 cc Elecare Jr. 4x/day
We are new here and pretty miserable and scared.
Our baby was dx'd with Crohn colitis based on clinical presentation and colonoscopy findings in Sept 2011 - at the age of 7 months.
Jack was born full term via planned c-sxn for breech and exclusively fed breast milk. He had lots of poos (7-8+ per day) and we were told this is OK as he was breast fed. He also had a diaper rash that just wouldn't quit. He started having spots of blood in his poo at age 4 months; mom stopped all dairy in her diet but he still bled and we were told not to worry by our (former) pediatrician. He was 75th percentile for weight/height until age 5 months, then dropped to 50th percentile. At age 6 mos, he stopped standing with assistance and developed fevers and was lethargic; our (former) pediatrician chalked it up to "a virus." At 6 mos 3 weeks, he was scoped and found to have multiple mucosal ulcers of the descending colon in a skip pattern; pathology showed severely active inflammation with crypt abscesses and mucosal erosions. Three days later, he stopped taking the breast and the bottle altogether and was hospitalized Oct 1 to 5 in NYC for dehydration. He received IV methylpred 1mg/kg and was sent home with an NG tube, which he pulled out within 4 days - around the same time he began accepting the bottle again. He was fed elemental formulas for 6 weeks, but symptoms persisted despite addition of Colocort enemas.
During this time, Jack never consumed anything other than formula, water or Pedialyte (thank God for Pedialyte). He didn't gain weight or grow in height.
We changed GI docs to a "big shot" at an academic center in NYC who specializes in IBD, and he increased the PO steroid and added sulfasalazine. Jack stopped growing altogether at around this time and had a few good days here and there but was mostly pretty miserable. His diaper rash - which never really got better - got a lot worse; it became a weeping, swollen bleeding mess. He cried every time we went near the changing table. We have tried EVERYTHING for the diaper rash to no avail; it only gets better when the colitis is better. Our GI doc just didn't get it; he actually told mom that she just needs to have a baby sitter come to give her a break once in a while! We begged for an alternative to prednisone and were started on 6MP 25 mg every other day on Jan 12.
Before starting the 6MP we scheduled a third opinion in Philadelphia and were advised to consider dropping the sulfasalazine as it can cause diarrhea and affect appetite. We did this and our NYC big shot fired us for failing to check with him first (he was very mean about it, too). The 6MP was increased to 15 mg per day in early Feb 2012, but Jack continued to do poorly. He decompensated to the point of no more bottles of anything and we were hospitalized in Philly from Feb 29 to March 9. During this stay, he was given IV methylpred 5 mg 2x day, Flagyl 90 mg 3 x day, and Pentasa 250 2x/day; of course, there is omeprazole for stomach protection. On day 4 of admission, he had an EGD and colonscopy - there were healing ulcers of the descending colon and one lesion at the splenic flexure and mild-mod inflammation (it was also day 4 of IV methylpred). The rectum appeared to be spared and the small bowel was clean. Pathology was... normal, completely normal. During that stay was also started on overnight enteral feeds of Elecare Jr 50 cc/hr and came home with an NGT and pump (and a good supply of extra NG tubes).
He did great - for a grand total of 10 days. No more diaper rash, actually eating some food, drinking his bottles, feeling great, 4 or 5 well formed poos, nice wet pee diapers, talking a lot. Then, the diaper rash returned on March 12 and it's been downhill ever since. For the past 4 days, he won't take anything by mouth so everything is via NG tube and he has become increasingly inconsolable with 10 BM/day. Interestingly, the poo is pretty well formed with not much blood (could it be C.Diff or the Flagyl at this point?). And, for the first time, his CRP is normal at 0.2 for two weeks in a row (was consistently 2.2+).
Now, our GI docs - who we trust, definitely get it and are trying their best - are talking about colectomy vs. Remicade if Jack doesn't start showing improvement on the 6MP. April 12 will be month 3 of 6MP and his 6TG levels still have room for improvement.
Has anybody else had a similar experience at such a young age? How does this play out? How many have opted for surgery at this point as opposed to Remicade?
Thank you for reading this very, very long post. We are freaked out and scared.
-Jack's Parents
Current meds:
6MP 17.5 mg/day
Omeprazole 4.4 mg BID
Prednisone 5 mg BID
Metronidazole 90 mg TID
Enteral feed Elecare Jr 50 cc/hr x 10-12 hrs (during sleep) 1 cc = 1 kcal
Bottle or NGT bolus 120 cc Elecare Jr. 4x/day
It is a very scary and overwhelming time when you receive the diagnosis and are forced to make such difficult decisions. There are wonderful parents and members on this site and you will find lots of information and lots of support. :ghug:
