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  1. Livilou

    Stelara Update

    Hello! Just wanted to share some happy news! My daughter has been on Stelara since May 2013 and tolerating the drug well. She had a rough summer...labs have not been great for about a year (she had her thyroid removed in 2011 because of a stage 1 cancer). As far as GI labs,,,her ferritin and...
  2. Livilou

    First dose of Stelara!

    So my Liv recieved her first dose last Thursday.....90mg given and no issues so far! I am a nervous wreck with her restarting biologics, but we really need to get the chronic inflammation under control. I am hoping Stelara will be the magic bullet for her. She is still on 6mg of Entocort; we...
  3. Livilou

    Update and Happy New Year!

    Hello! I hope everyone enjoyed the holidays and is well. I haven't posted recently,but I do check in to see how the kids are doing, and I know that many parents have been faced with some tough decisions. My heart goes out to all of you, it is so difficult sometimes. I have been knee-deep in...
  4. Livilou

    Chicken Pox vaccine and steroids

    Hi! I'm back with a new question! We recently found out that Liv has active CD from recent MRE..report shows mild sticture at resection site with proximal dilatation and approx 10 cm of new inflammation in a different segment of ileum. Also new involvement in rectosigmoid region?? Anyway, we...
  5. Livilou

    Discouraging news from GI today....

    Hi Everybody, Well, we went to see GI today to obtain results from Liv's MRE (done yesterday). MRE is showing progression of CD and mild stricture at her resection site...her last MRE was done 9 months ago, and GI feels this one looks like disease is rearing it's ugly head again. Bloodwork...
  6. Livilou

    LDN and supplements

    My 16 year old daughter has been on TD LDN since April...a recent scope shows inflammation and signs of active CD..waiting on biopsy results. GI wants a pill-cam study to look more closely at small bowel. I decided to change Liv over to LDN capsules now that she seems to be absorbing nutrients...
  7. Livilou

    Colonoscopy/LDN

    So everything went well with Olivia's scopes today-tolerated procedures well and prep quality was excellent. I did have fingers and toes crossed, and was hoping to hear that scope was negative for active disease, BUT, (they keep messing with my "happy bubble!) colonoscopy did show "some"...
  8. Livilou

    LDN and colonoscopy....

    My 16 yo daughter is on 4.5mg of LDN and is scheduled to have a colonoscopy/endoscopy on Tuesday. I was wondering how many days I should hold the LDN, before and after the procedure..waiting to hear from holistic MD that prescribed for us. Just thought I would check with other LDN users about...
  9. Livilou

    Bleeding after Remicade Infusions...

    Hi Everybody! My 19 year old son just received his 12th infusion earlier this week and we have noticed that he bleeds..post-infusion, anywhere from 3 days to 2 weeks after getting the drug?? The bleeding is small to moderate and is dark red/brown..it usually stops after 2-3 bowel movements. He...
  10. Livilou

    LDN Update...

    My 16 year old daughter has been on 4.5 mg of transdermal LDN now for 12 weeks. Things have been going well, she has had no CD symptoms and gained 7 pounds. She feels and looks great. Last night she returned home from a mini vacation with a friend, went into the restroom and reported to me that...
  11. Livilou

    Update on my teens...

    So, Olivia has hit the 12 week mark with transdermal LDN...I last updated that she was doing well, gaining weight, no CD symptoms. Last night she returned home from a mini vacation with a friend, went to the restroom and informed me that she had bright red blood in her stool. Last week, Liv had...
  12. Livilou

    LDN Update

    Hello! I haven't posted in awhile, but I thought I would update everyone on my daughter's progress with LDN. Olivia has been on LDN for approx. 7.5 weeks now and so far so good! I am still optimistically cautious at this point, however labs drawn this week came back great!! Anemia...
  13. Livilou

    LDN side effects!!

    So I started Liv on transdermal LDN on Monday night...all went well the first night, no weird dreams or sleep disturbances. Last night, I gave her the same dose, 2.25mg, I planned on only giving her half the prescribed dose for about a week and than slowly increase to 4.5mg. I wanted to be sure...
  14. Livilou

    Overwhelmed Mom/Newbie

    Hello! I have been reading these threads for awhile and have realized how supportive and comforting you are to eachother! I have finally decided to post my story. I have two kids with Crohns, my son Trevor is 18 and diagnosed in 2010. My daughter Olivia is 16 and diagnosed at age 10. The past 6...
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