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  1. pdx

    Heard from Doc today

    Really glad that she was able to get home! If O's symptoms continue at the same level, this might be a good time to reconsider EEN, either oral or through a tube. It would be so much easier than SCD (for her and you!), and so much safer than prednisone right now. She might be willing to...
  2. pdx

    Perspective - Covid-19 and our ibd kids

    We're hanging in there. Oregon schools also closed last week and will be closed for at least 6 weeks. E is super bummed about the possibility of missing the rest of senior year and all the events that go with that. The kids and I are staying close to home--haven't even gone out to go grocery...
  3. pdx

    Not yet diagnosed

    Hi there. Sorry to hear about all that your son has been going through this past year. Unfortunately, it is not uncommon for diagnosis to take such a long time. I hope the endoscopy and colonoscopy will give you some answers, and it shouldn't matter if your son isn't flaring right at the moment...
  4. pdx

    Perspective - Covid-19 and our ibd kids

    So glad to hear this, Maya. And that's amazing that she's so close to graduation, with all that she's dealt with the past few years. I hope this new drug works well for her.
  5. pdx

    Perspective - Covid-19 and our ibd kids

    Oh Maya--you are really stuck between a rock and a hard place. I'm so sorry. Is there no way for her to get put on the new drug without the in person visit?
  6. pdx

    Confused and scared

    I'm sorry that you're having to deal with so much uncertainty right now--it's scary when you are waiting for results and appointments. It sounds like you are doing everything right, though, and it's great that your son is feeling better now. Try not to worry too much until you've gotten the next...
  7. pdx

    Perspective - Covid-19 and our ibd kids

    Sorry to hear about your flu, crohnsinct--hope you have a fast recovery.
  8. pdx

    Perspective - Covid-19 and our ibd kids

    Tesscorm: The issue right now is trying to keep the spread slow enough that hospitals are not overwhelmed. Many of the 15% who do get moderate to severe symptoms need to be in the ICU for several weeks, and hospitals don't have the space (or personnel, especially if medical staff are sick or...
  9. pdx

    Back to the drawing board

    Sorry to hear about the weight loss and other issues. I hope the scope gives you some answers. I agree about also doing an MRE or pill cam, especially if the scope doesn't show evidence of IBD.
  10. pdx

    Keeping me on my toes...

    No, Kaiser requires us to switch, and that is hard since we love our pediatric GI. I think it's just a caseload issue, since Kaiser in Oregon has just 2 pediatric GI's (and that's up from the 1 that they had when E was diagnosed). There are dozens of adult GI's, so there's no scarcity there.
  11. pdx

    Keeping me on my toes...

    Sorry to hear about all that your kids are dealing with--that's crazy about the VAD! I hope the upcoming remicade infusion is enough to get S through to his next GI appt. E has also been having nausea, constipation and fatigue for the past few months, along with calprotectin results that have...
  12. pdx

    Need opinions

    Sorry that you are having to deal with this on top of IBD. My daughter's first Crohn's treatment was Remicade + methotrexate. Her doctor took her off methotrexate after 1 year, and she then developed a mild case of psoriasis on her scalp. We treated it topically using clobetesol which helped...
  13. pdx

    Drowning in medical bills

    So sorry to hear about all you're having to deal with. Even if you can't get home infusions, maybe things will be better when your son turns 18 and can use the in-network infusion center? I also agree that it's strange that you're being charged extra for the out of network infusion, when that is...
  14. pdx

    Colleges and Gi location

    More great advice--thank you.
  15. pdx

    Colleges and Gi location

    That is a really helpful list--thank you! Is tuition insurance something that you were able to purchase through the school? And obviously it must be possible to get a policy that covers preexisting conditions? We need to talk to the health center about shots. I think that E is willing to do a...
  16. pdx

    Colleges and Gi location

    In that case, it really seems like it would be good to be in the same city/town as his doctors. Even an hour drive would be a hassle with that many appts.
  17. pdx

    Colleges and Gi location

    Wow, time flies! E starts college next year, and while she has made leaps and bounds in terms of what she can handle on her own, she really wanted to be able to come home for infusions and her regular appointments. Since Oregon doesn't have that many colleges and she wants to study...
  18. pdx

    Heard from Doc today

    Oh man--big hugs to all of you. We tried SCD early on when my daughter's intestines were a mess, and while it did reduce her pain, it did not reduce inflammation and she lost weight--not from lack of eating enough calories, but because she wasn't able to absorb enough with her damaged...
  19. pdx

    Heard from Doc today

    Hope things go well at the appt.
  20. pdx

    Its been a really long time

    Thanks for the update! I know that a lot of our kids aren't really kids anymore, but it's great to hear how things are going with them. Glad to hear about the good lab numbers, and I hope that the Stelara infusion and addition of mtx are helpful.
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