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  1. nelsonshan

    If small bowel and colonic activity - is Entyvio a good choice?

    Hi - My son has already failed Remicade, Humira, and Stelara. They are looking at Entyvio as a possible option. First we are doing EEN, budesonide, and my hope is that he'll go into remission and we can continue on with Stelara. Should that fail, they are considering entyvio +- diverting...
  2. nelsonshan

    Advice on questions to ask VEO-IBD Dr.

    Hi - I know some of you have already offered advice, but just want to be as prepared as possible... My son has already went thru Remicade, Humira, and now Stelara. We're looking at a possible ileostomy. We have a virtual meeting with CHOP VEO-IBD on Wednesday morning, and I want to make sure...
  3. nelsonshan

    Anyone's child fail 3 biologics?

    Hi all - On my last post, we were looking into Stelara, after failing both Remicade and Humira. It's been about 7 months, and he's failing Stelara. His dr believe he's a primary non-responder. All of his inflammatory markers are up, and he's having pain even just walking. She wants to do...
  4. nelsonshan

    Calprotectin 926, Sed Rate increased

    Hi - My 10yr old son has been on Humira for 2 years now and has done really well. In the last month, his bowel movements have increased from 1-2 times daily to 3-5 times daily, and has been having stomach pain "that feels like Crohns". His dr is on maternity leave, but the dr taking over...
  5. nelsonshan

    Nasal ulcers

    Hi - My son has had CD for over 3 years now (he's 9). Everything seems to be going well and his test results are all great, including his Humira level. He keeps getting nasal sores that bleed, and he's very congested. His dr is starting to think he has nasal crohns, which is rare? She wants...
  6. nelsonshan

    Fecal Calprotectin 1102

    Hi - I haven't been on here in awhile. My son has had Crohn's for 3 years now - he's 9. He is finally well-controlled on Humira and Imuran. Now, the problem is my daughter. She is 11. She went thru a 10-day high fever. She had some stomach pain, and diarrhea, but no other symptoms. After...
  7. nelsonshan

    6tg low, so lowering imuran?

    Hi - Just wondering if anyone has any experience with low white counts while on Imuran? After WBC came back at 2.6, we were told to hold the Imuran for a week, and repeat the CBC. WBC went back up to 5.2, but at the time of the low white count, the dr also added an Imuran level. Today they...
  8. nelsonshan

    Is there any other child taking an adult dose of Humira?

    Help! It's been almost a month and HAP is still not approving the PA for my son's Humira. He is 8yrs old, and 68lbs (30kg). He had 160mg day 1, 80mg day 14, he'll get 40mg on Wednesday (day 28), and then dr wants 40mg EVERY week. We realize this is higher than adult dosing at 40 every other...
  9. nelsonshan

    Humira dosing in 8yr old/freaking out

    My 8yr old son failed Remicade today (2nd infusion reaction), and now they want to start Humira as soon as it's approved by ins. They are talking about starting at 160mg, then 80mg in 2w, then 40mg in 2w, and every week thereafter. This is adult dosing. They are trying to avoid antibody...
  10. nelsonshan

    8yo failed Remicade today; talk of Humira

    My 8yo son had another infusion reaction just seconds into his 4th Remicade infusion despite premed with Benadryl/Tylenol/solu Medrol. He had flushing, chest tightness, vomiting, pulse ox 80. Now they want to do Humira as soon as possible (once ins approved)/ hopefully within 1 to 2 weeks...
  11. nelsonshan

    Remicade infusion reaction

    Hi Everyone- On my son's 3rd Remicade infusion, he had a reaction (flushing, chest tightness, low bp, increased temp) about 10 min in. They immediately cut off the infusion and gave him Tylenol and Benadryl. We waited an hour and restarted the infusion. The rest went smoothly. Our next...
  12. nelsonshan

    Low White Blood Cell Count

    Hi - My 7yr old son just had his 2nd Remicade infusion today. On the drive home, we got a call from the nurses saying he's anemic again, and his WBC is a little low - 3.3. They said they will check it at his next infusion in 4 weeks. I looked at his count 2 weeks ago, and it was 7.5. Now...
  13. nelsonshan

    Starting Remicade tomorrow

    Hi - I've been away for a year. At my last post, our GI wanted to start Remicade in my 6yo son (at that time, he was only on Pentasa and had a course of steroids previous to that). I just wasn't comfortable with him being so young. We got into U of M for another opinion in December 2015. We...
  14. nelsonshan

    Treatment for 6yr old son

    Hi, I am new to this forum, as my son was diagnosed with Crohn's of the stomach, duodenum, and cecum this May. He is on Pentasa, prilosec, vitamin d, iron (newly deficient), and a probiotic. He did 2 months of steroids over the summer which worked wonders. The daily vomiting stopped completely...
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