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Recent content by WindingRs

  1. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    To keep a point of reference, recent calprotectin ressult is 101… blood results are also all normal. Some high end of the normal band, but normal. I feel cautiously optimistic :) We are scheduled to the LIFT surgery for his fistula next week. Keep us in mind please.
  2. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    No worries at all….The more the better. I am learning as we go.
  3. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    Only if i could convince him to watch his diet - a stubborn 17 year old. This is very funny 😄 i am amazed how much your kiddos know about their condition. Mine is totally hands off. Only goes and gets his injections. Thats about it.
  4. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    😂 Heard from the doctor. Just like you all said, he is focusing on the improvement for now. He said to continue Skyrizi on the same schedule and re-test in 2 or 3 months. He wants it below 250.
  5. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    Praying for further reduction! Thanks!
  6. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    Thank you so much all! You moms know a lot. Remicade did not heal the fistulas (he had 2). We did LIFT on one last summer, which was successful and confirmed by colonoscopy it is healed. Probably will do LIFT on the last one this summer.
  7. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    Great to know. Thanks for the reply!
  8. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    Originally, when he was diagnosed he only had fistulas, no intestinal manifestation at all. When we did colonoscopy 6 months ago his entire colon was inflamed. Doc said no need to do upper endoscopy or pill cam as the results wont change his course of treatment. So we know he has crohns in large...
  9. WindingRs

    When you get your result Friday night before Memorial Day Weekend!

    Emailed our GI at mid night on Friday 😂, but hard to wait. June 2021: started Remicade July 2022: Calprotectin over 1200 and increased Remicade dose December 2022: Calprotectin 800 February 2023: Colonoscopy showed crohns has spread, and started Skyrizi May 2023: Calprotectin 400. Not sure if...
  10. WindingRs

    Insurance Question

    IT GOT APPROVED TODAY! Fingers crossed it continues to work. I was in a panic mode all weekend! Thank you all for your kind words and feedback! At our last infusion, there was another teen getting Skyrizi at the same time. the nurse said more kids starting to get Skyrizi there.
  11. WindingRs

    Insurance Question

    He got all 3 infusions - finished last Friday. He never had any physical symptoms before, except the draining fistula, which still is draining. We only found out about Remicade not working by labs and scopes. The disease had speared to his entire colon with zero discomfort!! As for the lab...
  12. WindingRs

    Insurance Question

    great to know. Since Friday that i found out pharmacy has denied the request, i am super anxious. I feel I shouldn’t have started the infusions until i had the pharmacy approval in hand. “BTW, I resent the term "peer to peer" because they are not peers - it's our specialist in IBD who knows my...
  13. WindingRs

    Insurance Question

    @Maya142, i know my self, i will call again to make sure things are moving along :). It is frustrating to have a kid with a chronic illness and deal with this insurance non-sense.
  14. WindingRs

    Insurance Question

    @Pangolin Thanks! hopefully the issue is just the need for further explanations. Will keep you posted.
  15. WindingRs

    Insurance Question

    Thanks! @crohnsinct, i will try to stay hopeful. I could not help, but calling them today which didn’t get anywhere.
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