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Crohn's Disease Forum

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  1. S

    Please help - 4 yr old has fissures

    I'm so sorry your little one has been diagnosed so young :(. My son had a fistula before being diagnosed with Crohn's. He started remicade and the fistula stopped bothering him almost immediately. It has been almost two years and I am hopeful it is gone. I hope the same for your son. Since...
  2. S

    Heard from Doc today

    Prayers for O
  3. S

    Biosimilar

    Good info. Thanks.
  4. S

    Biosimilar

    Insurance agreed with the appeal! He is set for 6 months, but likely that's it as he will have passed the imaginary line between pediatric and adult. I'll take a look at my insurance options though as I can change plans in the fall. Thanks everyone!
  5. S

    Anyone with Crohn's and diagnosed with PSC?

    They are monitoring my Ds 17yo for this. :(. GirlwiththeCurl your post made me smile though! I love that she is asymptomatic.
  6. S

    Biosimilar

    Thanks - we will see what the response is of the appeal.
  7. S

    Biosimilar

    So he has small bowl and colonic disease. They call it Crohn's colitis. I don't know what the difference really is with UC as he had ulcers, bloody stool, and tenesmus at dx which is pretty similar to UC as I understand it. The granulomas were found in the colon. Interesting that UC can be in...
  8. S

    New article - diet Crohns things to avoid

    So we met with a nutritional doctor shortly after son dx last year. Dr is a Crohn's patient as well at 82 - and very healthy. We have since cut out red meat and pork, only eat poultry and fish. Potatoes and rice, no wheat or any other grain than rice. No carrageenan, no Polysorbate 80, no...
  9. S

    Biosimilar

    Honestly I feel like this is a breach of contract. I have to choose a new insurance or renew each fall. We stayed with the company bc they paid for all of this. Now halfway through they changed what they will pay for...but I am stuck with them until the end of this year. Nurse said once he's...
  10. S

    Biosimilar

    I spoke with his infusion nurse when I received the letter. She said she is talking to the GI because he is a pediatric. Apparently pediatric use for Crohns is approved but not colitis. He has both so she is hoping the appeal works. He goes to an adult practice, and they have already been...
  11. S

    Biosimilar

    I received notice from my insurance yesterday that my son's Remicade is not approved. The insurance wants to switch him to a biosimilar. Anyone have experience with this? He was diagnosed last May, started Remicade in June and was symptom free within 3 days. Since last year he gained 30 lbs...
  12. S

    Crohn's kid, mouth ulcer with cold

    I really appreciate the help. He is still dealing with the cold! But the sores went away! I did mention it to the Dr/Nurse and they said what you all said, not to worry about it, likely from the cold. FYI - I checked in on another issue in thread histories and you all are like...
  13. S

    Crohn's kid, mouth ulcer with cold

    Hi, So my teen son with Crohn's has been doing well with Remicade. He has been having a tough time with a cold though and is due for his next infusion next week. Today he showed me that he has a mouth sore. He would get them before diagnosis, whenever he had a virus. Later we found out that...
  14. S

    Any thoughts on which "diet" is best?

    We went to Dr Grovitt - ibdinkids.com. He taught us a lot about foods to avoid and foods to eat. Highly recommend contacting him. It's been helpful here.
  15. S

    Possible Crohns diagnosis

    Hi Sallie94 - not a Crohn's expert - my older son was just dx in April - but tons of experience with another son with growth issues. We had to overfeed him to get his body to start growing (2600-2800 calories depending upon how active he was). If the body is malnourished it feeds the vital...
  16. S

    Sibling concerns

    Thank you both!
  17. S

    Sibling concerns

    It sounds odd but he has somewhat of a ritual in the morning. A local company makes chocolate shakes that you can buy bottled. It is dense, high in calories and was an easy solution from back when we were trying to get his weight up. He still to this day has that when he wakes up and does not...
  18. S

    Sibling concerns

    Low iron and stomach pains for K. But pains go away after morning. Stool test sounds simple enough. Thanks!
  19. S

    Sibling concerns

    Yes - you have it right :). Younger son's name starts with K. Older son dx with CD is A. And I have a healthy oldest C :)
  20. S

    Sibling concerns

    Wow - this is a little like stage fright - I have never shared information like this publicly:eek:. I am mom of recently dx CD 16 yo son - A. (April 2018) but my story starts with his younger brother, now 14. 2012-2014ish we really struggled with nonCD son (then 8-10 years old). He was born...
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