I feel sympathetic with all of the parents on this forum. I have read many of the posts here and though so many stories are different, I feel we all come from the same place, hoping to find an answer to the difficulties our children face with this disease.
And so I begin, here is our story.
Though always small, my son flat-lined on growth chart at around 10 years old. After a couple years of no linear growth, pediatrician finally referred us to a GI in summer of 2013.
Son has no outward symptoms of Crohn's, except rare complaints of stomach ache after eating. GI ordered standard set of tests. Lab results (CRP, ESR. Hemocrit, etc.), normal. MRI, normal. Pathology report however, indicated abnormalities such as "sections of the TI show disorganized villi and increased lamina propria cellularity w/ plasma cells, lymphcytes, and neutrophils...patchy cryptitis with rare crypt abscesses. Prominent submucosal lymphoid aggregates evident." H. Pylori was also detected in stomach. GI diagnosed Crohn's.
Being newbies to all of this, and son having no complaints other than growth failure, we reluctantly agreed to H. Pylori treatment, followed by 5-ASA. This totally wrecked him. He had a bout of stomach distress which neither pediatrician nor GI could figure out. Flare was assumed, and our son was put on prednisone. Within a few days problems resolved. Tapered off prednisone over three month period and moved to budesonide (Entocort) for about 4 months, on hope of finishing school year without any further episodes. And so it was. But still, no growth. GI wanted to escalate treatment to AZA/6MP. We balked at this and convinced him to let us try SCD for 3 months. Within first month of SCD son grew a little over an inch! But he tired of the food, slowed eating, and started shedding weight he had gained during the prior past few months.
Fast forward summer 2014. Still not convinced our son had Crohn's we sought second opinion. 2nd opinion also said Crohn's. And that GI suggested either going on EEN indefinitely, or Remicade. Though biologics were scary to us, we leaned toward them because our research pointed toward new paradigm of top-down treatment to change history of disease, and we figured EEN would be too high a sacrifice to demand of a child that had no symptoms other than growth failure. Let me restate that our son has none of the other outward manifestations of Crohn's. No bloody or loose stool. No diarrhea or urgency. Once or maybe twice daily stool, 2 - 4 on the Bristol scale. And only isolated complaints of stomach ache every few weeks or months.
Before starting Remicade around Sept. 2014, he had new scopes done to establish baseline. This time around, the terminal ileum biopsies came back with normal villous architecture, scattered lymphoid aggregates, no neutrophilic infiltrates. Colonic biopsies however showed increased lamina propria cellularity with increased lymphocytes, eosinophils, and neutrophils.
Also like to add that neither scope in 2013 nor 2014 showed any granulomas.
So on to Remicade and today, 5 months' hence. After 3 loading doses and 2 maintenance doses, no tangible growth. We have done IFX test for trough levels and antibodies and though levels slightly high, no antibodies. GI did a capsule endoscopy a couple weeks ago which came back pristine. Only comment was some nodularity in stomach, perhaps indicative of H. Pylori infection. And if you look at his scope images, there is nothing there. Pink tissue with well defined vascularity evident throughout.
And so here we are. GI now questioning whether Crohn's is right diagnosis because other than pathology report, nothing supports it and there is no growth. And lack of growth to any treatments is confounding him. We had a really promising inch of growth during the first 4 weeks of SCD, but other than that, only a few millimeters here and there every couple months on follow-up visits.
This was such a long background, sorry if it's too much. Thank you for reading it.
Can this be Crohn's?
Nick
Dad to 14 y.o. boy.
And so I begin, here is our story.
Though always small, my son flat-lined on growth chart at around 10 years old. After a couple years of no linear growth, pediatrician finally referred us to a GI in summer of 2013.
Son has no outward symptoms of Crohn's, except rare complaints of stomach ache after eating. GI ordered standard set of tests. Lab results (CRP, ESR. Hemocrit, etc.), normal. MRI, normal. Pathology report however, indicated abnormalities such as "sections of the TI show disorganized villi and increased lamina propria cellularity w/ plasma cells, lymphcytes, and neutrophils...patchy cryptitis with rare crypt abscesses. Prominent submucosal lymphoid aggregates evident." H. Pylori was also detected in stomach. GI diagnosed Crohn's.
Being newbies to all of this, and son having no complaints other than growth failure, we reluctantly agreed to H. Pylori treatment, followed by 5-ASA. This totally wrecked him. He had a bout of stomach distress which neither pediatrician nor GI could figure out. Flare was assumed, and our son was put on prednisone. Within a few days problems resolved. Tapered off prednisone over three month period and moved to budesonide (Entocort) for about 4 months, on hope of finishing school year without any further episodes. And so it was. But still, no growth. GI wanted to escalate treatment to AZA/6MP. We balked at this and convinced him to let us try SCD for 3 months. Within first month of SCD son grew a little over an inch! But he tired of the food, slowed eating, and started shedding weight he had gained during the prior past few months.
Fast forward summer 2014. Still not convinced our son had Crohn's we sought second opinion. 2nd opinion also said Crohn's. And that GI suggested either going on EEN indefinitely, or Remicade. Though biologics were scary to us, we leaned toward them because our research pointed toward new paradigm of top-down treatment to change history of disease, and we figured EEN would be too high a sacrifice to demand of a child that had no symptoms other than growth failure. Let me restate that our son has none of the other outward manifestations of Crohn's. No bloody or loose stool. No diarrhea or urgency. Once or maybe twice daily stool, 2 - 4 on the Bristol scale. And only isolated complaints of stomach ache every few weeks or months.
Before starting Remicade around Sept. 2014, he had new scopes done to establish baseline. This time around, the terminal ileum biopsies came back with normal villous architecture, scattered lymphoid aggregates, no neutrophilic infiltrates. Colonic biopsies however showed increased lamina propria cellularity with increased lymphocytes, eosinophils, and neutrophils.
Also like to add that neither scope in 2013 nor 2014 showed any granulomas.
So on to Remicade and today, 5 months' hence. After 3 loading doses and 2 maintenance doses, no tangible growth. We have done IFX test for trough levels and antibodies and though levels slightly high, no antibodies. GI did a capsule endoscopy a couple weeks ago which came back pristine. Only comment was some nodularity in stomach, perhaps indicative of H. Pylori infection. And if you look at his scope images, there is nothing there. Pink tissue with well defined vascularity evident throughout.
And so here we are. GI now questioning whether Crohn's is right diagnosis because other than pathology report, nothing supports it and there is no growth. And lack of growth to any treatments is confounding him. We had a really promising inch of growth during the first 4 weeks of SCD, but other than that, only a few millimeters here and there every couple months on follow-up visits.
This was such a long background, sorry if it's too much. Thank you for reading it.
Can this be Crohn's?
Nick
Dad to 14 y.o. boy.
