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No. We waited about 2 months for that appt and a day or two before it they called and told us they accidentally scheduled him with her adults and she couldn’t see him as an adult so it would be about two more months. Our Dr at UNC changed during that first two month period though and he has...

10 year old on Remicade since 11/2021. Started at 10mg/kg every 8 weeks and it worked great. Reduced to 7.5mg and then to 5mg later on. After the change to 5mg we started seeing changes in his labs. ESR going up, iron going down, Calpro going up, etc. Asked about this over and over and finally...

Honestly don’t know the answer to that. He had scopes last August and scans that Oct. The clean out was poor for the scopes but what they could see was healthy and the scans came back normal. His Calpro was over 2000 then. We do know when he was diagnosed the inflammation was in his small intestine.

Will any of you with experience talk to me about this drug. My son’s doctor is talking about adding it to Infliximab (10mg/kg/6weeks) and I just learned that it’s actually a chemo drug. He had his 1st infusion at 6weeks instead of 8 this month. His Infliximab level was 27, his sed rate had...

So we met with GI today but a different doctor who looked over all of our sons stuff over past days. He suggested a few things to consider and we decided that before we change meds we’ll try a different infusion rate (6weeks instead of 8) and another level check to see where things stand at 6...

In July 2023 Calpro was 2212 mcg/g Sept. 2023 Impression -- Interval resolution of previously demonstrated bowel wall thickening. No recurrent or residual bowel wall thickening, wall hyperenhancement, or luminal narrowing is seen to suggest active inflammation of the bowel. Narrative EXAM: CT...

Maybe it was a CTE? He had contrast that he drank as well as intravenous. Is that CTE? Anyway, it came back with no signs of inflammation. I believe his Calpro was around 1500 then. It’s very confusing.

His CT was with contrast. They suggested an MRI but when we told them the only way he could do an MRI is under sedation they refused. He’s ASD with sensory to many things including sound. He basically has a panic attack when it thunders, during smoke alarms, etc. He watches the sky every day out...

Every 8 weeks How quickly does calpro change? Can it show improvement but then go up again in 8 weeks if he’s burning through the Inflixima? I know sedrate can be kinda slow to change but we sure hoped to see it go down some since last time, not up. Also, his Crohn’s is in his small intestine.

He’s also ASD with sensory issues, especially food. He’s currently on a 90% formula diet (pediasure and Kate farms) by not by tube. The only other food he eats is goldfish crackers. I guess they thought things were going in the right direction when they started lowering his dosage but his 1st...

OK. Thank you both.

I confused you. They raised the dosage to get his calpro down but it isn’t working. His last trough level was around 7 but he was on the 5mg dose then. The last time they tested it on 10mg dose(over a year ago) it was around 30.

10 years old, on Infliximab since Nov ‘21. Started at 10mg/kg, then 7.5mg, then 5mg. Calpro started going up (never been lower than 275) so went back to 10mg for last 3 infusions (last one was Wednesday). calpro >3000, was 2880 last month. ESR 45, was 33 last month albumin low Iron is low They...

The have not added any meds. He started out on 10mg/kg in the hospital in Nov ‘21 and rapidly improved and did well. Then they lowered the dose to 7.5mg/kg (every 8 weeks) and he still did well but his trough levels were in the 30’s. Since he was doing well and trough levels were supposed to be...

Our son (10) is on Avsola (Infliximab). His ESR is 34, his Albumin is low, and his Calpro is almost 3000. His Calpro has been over 1500 for almost a year. He had an endoscopy, colonoscopy and CT scan last year and all of those showed huge improvement since his first scopes/scans in ‘21. This...

I could add that he’s on a liquid diet primarily due to sensory issues related to Autism. Poor guy has been dealt some difficult cards. He drinks pediasure and Kate farms but does eat some goldfish crackers. The only time he vomits is in the car.

The pain was right in front of his ear right at the joint, a hard lump of sorts, but his entire cheek swelled up. His PCP said he thought it was a lymph node and viral but to finish the antibiotics and if it happened again he would refer him to an ENT. I just find it hard to believe that out of...

In December my son’s right jaw, right in front of his ear, was hurting and then his cheek swelled up. His GI doc didn’t think it was connected to his crohn’s so we took him to the dentist and called his pcp. No answers were found/given and the swelling went away in a few days. Then, the end of...

Our son was diagnosed at 7. He had a bad URI that led to night sweats, night fevers, weight loss, anemia, loss of appetite, etc. He never had diarrhea or any other typical CD symptoms. We saw several doctors and finally ended up at UNC childrens. They saw inflammation in his bowels while doing...

I think his case is a little odd so I hope it helps someone to tell about it. It‘s not a perfect account, sorta paraphrased I guess. Our 8yr old son is autistic and has sensory issues. He doesn’t eat well, is afraid of poo, doesn’t like to be around people who are eating and won’t look at his...