- Joined
- Apr 5, 2013
- Messages
- 18
I don't even know where to start.. first off thanks to my little penguin for directing me here. I have read a lot of the threads in the last week and gained a lot of information.
My son is 10 years old and has sort of a long medical history. Starting with issues with the pg and then born needing O2, then feeding issues right off the bat. Failure to Thrive as an infant, ng tube fed neocate and finally TPN from 6-10 months and back to ng for awhile until he was able to drink enough neocate. Stayed on that until he was almost 2. He was always sick, RSV.. rotovirus, pneumonia, septic once. We took him to an immunologist at 15 months who ran a lot of tests and he was dx with a primary immune deficiency called CVID and has been on monthly IVIG infusions since he was 18 months old.
Stomach pain never went away even though a lot of his other issues got better with the IVIG. We slowly introduced milk after the neocate, he went from almond milk to lactose free milk to reg milk over the course of a couple of years. He was growing fine, always in the 90-95% for height but 25-45% for weight so he just looks like he is skin and bones. Had a couple of endoscopes looking for eosinophils and one colonoscopy that did find that he was lactose intolerant and some other enzymes were low, maltose and sucrose or something like that. Anyways.. we just dealt with it. He has joint pain, rheumatologist said he was fine, no issues.
Last April I finally made another appt with GI because he hadn't been able to swallow certain foods for almost a year.. meat, bread so on. Stomach pain, bloating, diarrhea/constipation.
Did endoscope in April, it was okay.. some eos in the esophagus and everything else I guess was ok. (I really need to get copies of these) they put him on gastrocrom and prevacid. Things did not improve a whole lot. During the summer they did a 2 month course of prednisone with him and that did help somewhat. In Nov they wanted to scope again but this time add a colonoscopy in. We did that and this time there were abscesses and significant number of eosinophilic clusters found in his ileum. He was put on Entocort, pentasa and went for allergy testing which found him allergic to milk, soy, beef, lamb, fish, shellfish. He was dx with eosinophilic gastroenteritis and he started supplementing his limited diet by drinking neocate splash.
End of Dec, first part of Jan he had another flare.. weight loss, bloating, diarrhea, unable to swallow. Back on entocort and got a little better. March again same thing this time they did stool tests that showed occult blood and inflammation. Something called a fecal calprotectin or something like that test. Ran that twice but the first time we couldn't get any actual stool it was just mucous that had tested positive for blood, but I couldn't see it visually, then the next week we were able to get a better sample, that showed blood still and the inflammation. The one thing I noticed while collecting the sample was the large amount of pentasa beads that were in it. Yikes!
So they ordered CT scan, couldn't do IV contrast because of allergies and the fact that he was just in the ER that week with anaphylaxis and we don't know what from. Drinking the barium gave him his first ever 10/10 on the pain scale and omg.. let's never see that again. poor guy.
Saw the GI on Monday to review the results and they said they were expecting to see inflammation in the small bowel but it showed inflammation in his stomach and something else was said about not being able to rule out an obstruction?? (I really need to get copies of these things, I suck at just auditory information.) So... GI and head of GI (who we were consulting with) feels that we are on the wrong path with the EGE and that Nick actually fits more in the Crohn's area. He took him off the pentasa and gastrocrom for the time being and we are waiting for the last round of prednisone that he was on for his anaphylaxis to get out of his system and head of GI wants to do his scopes again and "do it right" as he put it. That is odd I thought?
I am sure I am leaving stuff out or have got things mixed around.. it was sort of blurry around Nov/Dec. I hope that gives everyone enough info to get an idea of what Nick is going through. His pain level is between a 4-7 after most meals. He usually has a BM after meals as well and bloating, swallowing is still a huge issue (which I don't see listed as a crohn's issue?). He says he hasn't seen the pure mucous in awhile but that there is mucous in the stool that he has most times. I don't know if that means there is blood or not. We go back to GI on the 22nd to get weight check and schedule scopes.
My son is 10 years old and has sort of a long medical history. Starting with issues with the pg and then born needing O2, then feeding issues right off the bat. Failure to Thrive as an infant, ng tube fed neocate and finally TPN from 6-10 months and back to ng for awhile until he was able to drink enough neocate. Stayed on that until he was almost 2. He was always sick, RSV.. rotovirus, pneumonia, septic once. We took him to an immunologist at 15 months who ran a lot of tests and he was dx with a primary immune deficiency called CVID and has been on monthly IVIG infusions since he was 18 months old.
Stomach pain never went away even though a lot of his other issues got better with the IVIG. We slowly introduced milk after the neocate, he went from almond milk to lactose free milk to reg milk over the course of a couple of years. He was growing fine, always in the 90-95% for height but 25-45% for weight so he just looks like he is skin and bones. Had a couple of endoscopes looking for eosinophils and one colonoscopy that did find that he was lactose intolerant and some other enzymes were low, maltose and sucrose or something like that. Anyways.. we just dealt with it. He has joint pain, rheumatologist said he was fine, no issues.
Last April I finally made another appt with GI because he hadn't been able to swallow certain foods for almost a year.. meat, bread so on. Stomach pain, bloating, diarrhea/constipation.
Did endoscope in April, it was okay.. some eos in the esophagus and everything else I guess was ok. (I really need to get copies of these) they put him on gastrocrom and prevacid. Things did not improve a whole lot. During the summer they did a 2 month course of prednisone with him and that did help somewhat. In Nov they wanted to scope again but this time add a colonoscopy in. We did that and this time there were abscesses and significant number of eosinophilic clusters found in his ileum. He was put on Entocort, pentasa and went for allergy testing which found him allergic to milk, soy, beef, lamb, fish, shellfish. He was dx with eosinophilic gastroenteritis and he started supplementing his limited diet by drinking neocate splash.
End of Dec, first part of Jan he had another flare.. weight loss, bloating, diarrhea, unable to swallow. Back on entocort and got a little better. March again same thing this time they did stool tests that showed occult blood and inflammation. Something called a fecal calprotectin or something like that test. Ran that twice but the first time we couldn't get any actual stool it was just mucous that had tested positive for blood, but I couldn't see it visually, then the next week we were able to get a better sample, that showed blood still and the inflammation. The one thing I noticed while collecting the sample was the large amount of pentasa beads that were in it. Yikes!
So they ordered CT scan, couldn't do IV contrast because of allergies and the fact that he was just in the ER that week with anaphylaxis and we don't know what from. Drinking the barium gave him his first ever 10/10 on the pain scale and omg.. let's never see that again. poor guy.
Saw the GI on Monday to review the results and they said they were expecting to see inflammation in the small bowel but it showed inflammation in his stomach and something else was said about not being able to rule out an obstruction?? (I really need to get copies of these things, I suck at just auditory information.) So... GI and head of GI (who we were consulting with) feels that we are on the wrong path with the EGE and that Nick actually fits more in the Crohn's area. He took him off the pentasa and gastrocrom for the time being and we are waiting for the last round of prednisone that he was on for his anaphylaxis to get out of his system and head of GI wants to do his scopes again and "do it right" as he put it. That is odd I thought?
I am sure I am leaving stuff out or have got things mixed around.. it was sort of blurry around Nov/Dec. I hope that gives everyone enough info to get an idea of what Nick is going through. His pain level is between a 4-7 after most meals. He usually has a BM after meals as well and bloating, swallowing is still a huge issue (which I don't see listed as a crohn's issue?). He says he hasn't seen the pure mucous in awhile but that there is mucous in the stool that he has most times. I don't know if that means there is blood or not. We go back to GI on the 22nd to get weight check and schedule scopes.
