- Joined
- Apr 15, 2012
- Messages
- 14,792
Our story- my son was diag. with Crohn's in Sept 2011 at the age of 7.
He has had constipation since he started foods. The GI ruled out EoE ( eosinophillic Eosphagitis) in June of 2010. We were told he had reflux, but the symptoms would get better then worse. He had dysphagia, stomach aches, no weight gain from age 5, rectal prolapse, constipation. In Jan of last year was the first time he had rectal prolapse. We were told not to worry 10 days of miralax and he would be fine by the Ped.:trolleys:
Since he had seen the GI the summer before we gave them a call and told them what was going on. We were seen with in the week.
GI was concerned by what was going on and added Kids boost to his diet as well as miralax. The Prolapse did not go away. Vomiting started in May and continued every two weeks until JUly. He had a upper GI with small bowel follow through. It looked normal and were even told they could not see the terminal ileum which was good because IF he had Crohn's it would have "lite up":voodoo:
So we added more meds and more boost with weekly weight checks. His weight would increase drastically with 3 shakes but slowly lose the minute we went to 2.:frown:
BY the end of August small amount of diarrhea with small amounts of blood. This led to the upper and lower scope at the end of Sept.
They found focal gastritis, duodenitis, ileitis,and a granuloma in the cecum.
Before the scope the GI told us colitis. The scope itself was mostly normal with a little bit of red but the biopsies confirmed Crohn's. We took him to another children's hospital for a second opinion since the first GI had not heard of rectal prolapse and recurring vomiting with Crohn's.
Doc #2 told us it was all from Crohn's pulled him off Pentasa and recommended 6-MP + Pred. and sent us back to doc #1.
Since I had been reading on here about EN, I convinced Doc#1 to do EN while we waited for the 6-MP to take effect. He drank 1700 calories orally of Peptamen Jr. for 9 weeks. All of his vomiting stopped. His Sed rate dropped from 34 to 10. His stomach aches and fatigue continued.
Within 2 weeks of starting food back he started vomting again:frown:
We added pred since his Sed rate was slowly increasing again. His Liver levels were also above normal and 6MMP levels were too high (10,000).
In March we did a wash out of 6-MP (50 mg to 12.5 mg) for a week. That was when we saw how much the drug was really helping. He was miserable.
We then added 50 mg of allopurinol which took a few days but helped a lot. He still has symptoms so the GI has increased his 6-MP to 25 mg since this 6TTG levels are below optimal therapeutic range (250). He also added Asacol 1600mg.
My son is still on 750 calories of Peptamen jr a day to keep his weight up. He still feels like he has to "go" constantly even in the middle of the night. We still have to keep him on miralax daily and even then he has trouble going. Stoamch aches daily in the LRQ area.
I am just so tired of this disease.
They should say that there is not effective treatment that takes away 100% symptoms since it has been almost 8 months or so and although we are better. He is still not where he should be.
I will ramble more later.
Thanks for listening.:sign0144:
RIght now just trying
He has had constipation since he started foods. The GI ruled out EoE ( eosinophillic Eosphagitis) in June of 2010. We were told he had reflux, but the symptoms would get better then worse. He had dysphagia, stomach aches, no weight gain from age 5, rectal prolapse, constipation. In Jan of last year was the first time he had rectal prolapse. We were told not to worry 10 days of miralax and he would be fine by the Ped.:trolleys:
Since he had seen the GI the summer before we gave them a call and told them what was going on. We were seen with in the week.
GI was concerned by what was going on and added Kids boost to his diet as well as miralax. The Prolapse did not go away. Vomiting started in May and continued every two weeks until JUly. He had a upper GI with small bowel follow through. It looked normal and were even told they could not see the terminal ileum which was good because IF he had Crohn's it would have "lite up":voodoo:
So we added more meds and more boost with weekly weight checks. His weight would increase drastically with 3 shakes but slowly lose the minute we went to 2.:frown:
BY the end of August small amount of diarrhea with small amounts of blood. This led to the upper and lower scope at the end of Sept.
They found focal gastritis, duodenitis, ileitis,and a granuloma in the cecum.
Before the scope the GI told us colitis. The scope itself was mostly normal with a little bit of red but the biopsies confirmed Crohn's. We took him to another children's hospital for a second opinion since the first GI had not heard of rectal prolapse and recurring vomiting with Crohn's.
Doc #2 told us it was all from Crohn's pulled him off Pentasa and recommended 6-MP + Pred. and sent us back to doc #1.
Since I had been reading on here about EN, I convinced Doc#1 to do EN while we waited for the 6-MP to take effect. He drank 1700 calories orally of Peptamen Jr. for 9 weeks. All of his vomiting stopped. His Sed rate dropped from 34 to 10. His stomach aches and fatigue continued.
Within 2 weeks of starting food back he started vomting again:frown:
We added pred since his Sed rate was slowly increasing again. His Liver levels were also above normal and 6MMP levels were too high (10,000).
In March we did a wash out of 6-MP (50 mg to 12.5 mg) for a week. That was when we saw how much the drug was really helping. He was miserable.
We then added 50 mg of allopurinol which took a few days but helped a lot. He still has symptoms so the GI has increased his 6-MP to 25 mg since this 6TTG levels are below optimal therapeutic range (250). He also added Asacol 1600mg.
My son is still on 750 calories of Peptamen jr a day to keep his weight up. He still feels like he has to "go" constantly even in the middle of the night. We still have to keep him on miralax daily and even then he has trouble going. Stoamch aches daily in the LRQ area.
I am just so tired of this disease.
They should say that there is not effective treatment that takes away 100% symptoms since it has been almost 8 months or so and although we are better. He is still not where he should be.
I will ramble more later.
Thanks for listening.:sign0144:
RIght now just trying
