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  1. cre

    Stelara for nine-year old

    @Pangolin That is very encouraging, thank you for sharing, and I'm happy to hear this was a positive thing for your son. This is something else we discussed today, we are on standby for approvals and that type of thing to begin EEN. The plan is to start that immediately while also waiting to...
  2. cre

    Stelara for nine-year old

    @crohnsinct , thank you! Yes, it is a scary thing. We feel like now is the time to take the gamble. Our doctor explained, because of his perianal disease, she would choose Stelara before Entyio as of now.
  3. cre

    Stelara for nine-year old

    @my little penguin Thank you so much for the insightful articles. I am going to go through and read up on them. Yes, he was several months shy of turning three when we finally got a dx (showing major signs 6 months before the dx). We spoke with our doctor today via telemedicine appointment...
  4. cre

    Stelara for nine-year old

    @crohnsinct Thank you so much for the information, it definitely raises questions to bring next week as we move forward with a medicine change. The majority of his issues have been in his colon. His run with Remicade was very brief and happened upon dx, 6 years ago and it lasted about 6...
  5. cre

    Stelara for nine-year old

    @Jo-mom Humira has never really been great for him. It is something that has kept him at bay, never sending him in a horrible downward spiral, but never put him into remission. Although his Humira levels look good, his most recent scopes show concerning amounts of inflammation. Another...
  6. cre

    Stelara for nine-year old

    We have recently moved and began seeing a new team of doctors. After an endoscopy and colonoscopy, our doctor is ready to switch him to Stelara. I am looking for any feedback anyone could give. Our guy has been on Humira for the past 5 years, previous to that he did a brief run on Remicaide...
  7. cre

    Methotrexate timing/side effects

    Yes. However, my son has gone back and forth between pills/injections/liquid because of the nausea. I would also suggest giving pills before bedtime, my son could sleep through the nausea. Methotrexate does make him a little more sleepy the next day and definitely gives him less appetite the...
  8. cre

    Children’s National doctor recommendation

    Hello everyone, I hope you are all doing ok. My family will be moving to the DC area soon and I am looking for any doctor recommendations you may have? We anticipate on being seen at Children’s National. My son is 9 y/o diagnosed with severe Crohn’s disease at 2 1/2. He also has perianal...
  9. cre

    SCD diet

    That is awesome, sounds like your little one is a good eater too...great! My guy is 8, diagnosed with severe Crohn’s colitis at 2 1/2. Because we only did it 2 weeks I think we didn’t get enough trial and error on the foods. Bread was another problem we had, we were having a hard time finding...
  10. cre

    SCD diet

    Yay! I’m so glad it is going well. I also bought the book Breaking the Vicious Cycle and have listened to many positive podcast success stories on SCD. We did the diet for 2 weeks all while our guy wasn’t feeling 100 percent so we stopped. He has growth issues (unrelated to IBD) and began...
  11. cre

    SCD diet

    @Optimistic , do you know anything about a2 milk? I was wondering if it is SCD legal but cannot find anything about it and SCD? We are successfully completing day 4 of SCD and I have been in the kitchen more than I ever have been in my life 🤣!
  12. cre

    SCD diet

    I’m sorry for that long road of C. Diff you had to go down but so happy she got rid of it Yay! I think we did try other antibiotics that didn’t keep it away. It has been a few years so I can’t remember exactly but I do know we did a fecal transplant (I will never forget that!😬)! He has been...
  13. cre

    SCD diet

    Thank you for the insight, I appreciate all we can get...good, bad, and ugly. Our doctor has been suggesting SCD for over a year and we have not really considered it too much until recently. Our main concern is not getting enough calories as he is having growth issues already, so we will...
  14. cre

    SCD diet

    Thank you for all your suggestions 😊. We did travel to Boston Children’s at one point, unfortunately nothing really came of it. Good to know about CHOP.
  15. cre

    SCD diet

    He was diagnosed at 2 1/2, after several very long months of not knowing, he is now 8. We have done many different meds and med combinations. Stelara is next on the list but we are kind of “saving” it for fear of it not working and not being able to get back on Humira.
  16. cre

    SCD diet

    Meds are borderline, they keep him at bay most of the time (exterior, labs and colonoscopies say differently), I do not believe he has ever been in remission since diagnosed at 2 1/2 y/o. We can’t get rid of c.diff and been on vancomycin for years. If we can improve anything we will count it...
  17. cre

    SCD diet

    He is currently on weekly Humira, methotrexate, and vancomycin. I have not looked into cded but I will definitely make it a priority, thank you for the suggestion.
  18. cre

    SCD diet

    Thank you, that is one of our concerns. What is chop?
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