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Crohn's Disease Forum

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  1. Twiggy930

    Is there really such a thing as remission?

    Here is a link to a TED talk where Salman Khan talks about Khan Academy and education. I found it really interesting. http://www.ted.com/talks/salman_khan_let_s_use_video_to_reinvent_education.html MLP - It is totally appropriate for even a 9 year old! The math tutorials start right from...
  2. Twiggy930

    Mixing Krill oil and Imuran

    My son took krill oil at the same time as Imuran for a while. There were no side effects from the combo except for fishy burps which he did NOT like.
  3. Twiggy930

    Is there really such a thing as remission?

    Have you checked out the Khan Academy online math tutorials? My son used them to keep up with math when he was missing a lot of school. It is free and I find them excellent, especially for math. I'll attach a link. https://www.khanacademy.org/
  4. Twiggy930

    In the early stages of diagnosis, treatment, etc.. and scared witless.. help?

    :welcome: So sorry to hear that your daughter has been unwell. I am glad to hear that she is getting good care in the hospital. My son was also symptomatic for at least a year before diagnosis but everything could always be explained by something more simple. It is really tough as a...
  5. Twiggy930

    Good news, So so news and Sad news

    FWIW Sulfasalazine seems to keep my son's enthesitis at bay and also seems to keep his abdo pain at bay too. Might be worth looking into.
  6. Twiggy930

    Good news, So so news and Sad news

    So sorry to hear about your son's doctor. I know how attached we parents can get to the good ones. My son's GI has given the ok to NSAIDs if my son needs them for his joint issues. Granted this advice was given with the assumption that the NSAID wouldn't be taken for extended periods of...
  7. Twiggy930

    Broken sleep driving me bonkers!!

    We let my son use a iPad in bed to watch movies when things were really bad. As was said previously we were totally against tv watching in bed but I didn't see any harm in it when the alternative was lying awake in pain. Hope this passes soon for both of you.
  8. Twiggy930

    Missing the second day of middle school.

    So sorry to hear that Nick has had to miss his second day of school. Please rant away! I too feel like ranting when this rotten disease causes my son to miss things. At times it has felt like it has made him miss far too much. Hopefully Nick will be feeling better soon. It is always so...
  9. Twiggy930

    Feel like such a terrible mom

    You are not a bad mom! Or if you are so am I! I have been in exactly the same situation so many times and made exactly the same call. It is impossible to know the right answer all the time and we just have to try our best. Knowing when to push and when not to seems impossible at times. I...
  10. Twiggy930

    Therapy for Kids

    My son has seen a therapist and it was mildly helpful. Look for one with experience in kids with chronic illness.
  11. Twiggy930

    Drug options

    When my son had his initial bout of enthesitis GI put him on Pentasa in addition to the azathioprine that he was already taking. This combo did not improve anything. When we finally got him seen by Rheumatology they scoffed at the addition of Pentasa and preferred sulfasalazine. This combo...
  12. Twiggy930

    Future of IBD Meds?

    I have high hopes for the SSI by Q Biologic. I'll attach a news story about it from a couple of months ago. http://globalnews.ca/news/606100/new-clinical-trial-for-Crohn's-disease/
  13. Twiggy930

    Drug options

    What about methotrexate and sulfasalazine as a combo? The only side effect my son has had from the sulfasalazine is the odd headache (really not many) and a wicked stomach ache if he does not take it with a full meal (easy to solve that problem). I know the consensus is that it is a drug that...
  14. Twiggy930

    Dairy

    My son does a reduced lactose diet and it seems to help. He drinks lactose free milk, eats aged hard cheeses and eats lactose free yogurt (I've even made my own). If he eats any dairy that contains lactose he takes a lactaid pill and we try and limit how often he does this.
  15. Twiggy930

    Proctitis

    Sending you {{{{{hugs}}}}}
  16. Twiggy930

    What can he try?

    Xmdmom have you looked into the Site Selective Immunomodulator (SSI) that is being trialled by Q Biologics right now? http://http://www.qubiologics.com/technology/how-it-works/ http://www.crohnsforum.com/showthread.php?t=43965 I understand that a drug trial is not likely what you are...
  17. Twiggy930

    Anyone currently doing the Qu Bioligics SSI Vaccine?

    The trial just started in Canada about a month or so ago. I have not heard how it is going.
  18. Twiggy930

    Much Ado About Nothing! eh!

    Don't knock the bacon and doughnuts until you've tried it. I even went to a wedding a couple of years ago and instead of wedding cake they had a tower of maple bacon doughnuts. Dusty I think you read The Thorn Birds a few too many times...
  19. Twiggy930

    Is there really such a thing as remission?

    Our GI assures me that my son's Crohn's is under control. All labs, including fecal calprotectin, come back normal. But my son still gets a day or two here and there where he doesn't feel well. He describes it as an overall feeling of being unwell (usually some abdo pain as well) and he looks...
  20. Twiggy930

    Mom Freaking out...puting 11yr old son on 6mp

    Just wanted to let you know that my son (he just turned 12) has been on azathioprine (very similar to 6MP) since February 2012 and has had no side effects. For a while he was on both azathioprine and pentasa together and had no side effects from that combo either. He now takes azathioprine...
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