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  1. pdx

    Entyvio vs Stelara - looking for advice

    My daughter also hates injections, and has pretty severe sensory issues, but she has dealt with shots and infusions 9 years now, and we've gotten through them without too much drama. We've never tried pens, but my sense is that they aren't less painful, and can even be more painful. They can be...
  2. pdx

    5yo Son Diagnosed 1/20/21

    I don't have any insight into most of those lab numbers--sorry. But that calpro is wonderful!
  3. pdx

    Heard from Doc today

    Wonderful! Will O stay with you through the summer?
  4. pdx

    Stelara Levels

    Latest calpro was 290, which isn't terrible. And she is finishing her junior year already, if you can believe that.
  5. pdx

    Stelara Levels

    Her doctor considers her level to be "in range." The scope will happen before we hit 4 weeks on the current dose, so it doesn't seem unreasonable to wait for those results.
  6. pdx

    Stelara Levels

    Her doctor wants to do a scope before deciding what to do; she's scheduled for the end of the month.
  7. pdx

    Stelara Levels

    E is currently symptomatic and Stelara levels just came back at 2.8 mcg/mL at 6 weeks post injection. (She is currently on every 8 week dosing.) A quick Google search makes me think this is low. Anyone have experience with what levels led to increased dosing? Results just came back so I haven't...
  8. pdx

    Adverse reaction during Remicade Infusion

    Just anecdotal info here, but... My daughter also had Crohn's that was mostly active in her terminal ileum. After 6 years on Remicade, she was slowly losing response even with dose increases. She was switched to Entyvio and it never helped her at all--things just got progessively worse. After 6...
  9. pdx

    Heard from Doc today

    I'm just catching up--so sorry to hear all the latest. I really hope things go well on Friday.
  10. pdx

    Heard from Doc today

    Thanks for updating--so so glad to hear that the surgery went well.
  11. pdx

    Heard from Doc today

    Will be thinking of you all tomorrow. Hope the surgery goes really well and that recovery is quick and complication-free.
  12. pdx

    Heard from Doc today

    I really hope the additional imaging helps with the decision-making. Hope everything goes well.
  13. pdx

    Norovirus and calprotectin

    Thanks, Maya and CIC. Our GI says to wait 6-8 weeks, so we'll go with that. E is feeling much better; the infection lasted about a week, and her symptoms didn't seem to be out of the ordinary.
  14. pdx

    Norovirus and calprotectin

    Quick question for the committee. E has been on Stelara for about 6 months, and overall doing well but still experiencing fatigue and occasional abdominal pain. She has enough symptoms that we are wondering if she'll need to switch to more frequent injections. Calprotectin post resection just...
  15. pdx

    Can't turn around a flare - advice

    OK, that's good that you've requested imaging. I'm really surprised that her doctor hasn't done any since diagnosis. Our GI has always ordered an MRE, and often a scope, when my daughter has been in a stubborn flare. She has also gotten one when she changes meds, so that the doctor has a...
  16. pdx

    Can't turn around a flare - advice

    So sorry that your daughter is having such a hard time. When did she last have scopes and/or imaging? I'm wondering where her inflammation is.
  17. pdx

    Mental Health and Pediatric Crohn's

    Maya's response reminded me that I meant to mention Camp Oasis. Have your kids had a chance to meet other kids with Crohn's? E went to Camp Oasis for two years and I think it helped her to meet other kids and counselors who could understand what she's gone through.
  18. pdx

    Mental Health and Pediatric Crohn's

    Meds and therapy have been very helpful for both of my kids, one with and one without Crohn's. E and I also participated together in a year-long DBT skills group for teens and parents that was very helpful for both of us. I think groups can be a bit "luck of the draw" though; we happened to be...
  19. pdx

    H's Brother

    E's first treatment was Remicade + methotrexate, and she never had psoriasis while on the combo. After a year her doctor wanted her to trial dropping mtx, and she developed scalp psoriasis a few months later. We tried different shampoos and steroid ointments, but the only thing that helped was...
  20. pdx

    Birth Control Pill

    Sorry--don't have suggestions just sympathy. My daughter also has painful cramps and heavy bleeding during her periods, which contributes to her iron deficiency. She also had a large (10cm) ovarian cyst that was removed last summer during her resection, and now has another one growing in the...
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