Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 > I wasn't sure if LDN is still considered OT, so I decided to put it > anyways =) Anyways, I'm still not having consistently formed stools > even with the azathioprine and the prednisone, so I'm going in for a > colonoscopy on August 10th. My GI wants to see if it's caused by > inflammation, or if it's just IBS. > > I'm going to go off dairy after I finish this batch of yogurt to make > sure it's not what's setting me off. I'm not sure what to hope for, > because I will definitely miss my cheese and yogurt if they're the > culprit =( > > Okay, I promise this is actually related to the subject line. If I > still have gut inflammation, my GI will probably put me on Remicade, > which I don't particularly want to go on. I would much rather try LDN > first, but my parents won't do it unless they have evidence that it's > safe for kids. Since I haven't had my period yet, they want to be sure > that the LDN won't somehow halt my development. you could join the austism LDN group and email Dr. McCandless on list and ask her about it once you are on it. She is an autism doctor that regularly prescribes LDN to autistic kids. But not only autistic people/kids are on the list. I'm on that list, because at times she gives interesting info. http://health.groups.yahoo.com/group/Autism_LDN/ anyway - it's a small list and gets some traffic, but not like this one. She's in the middle (or end?) of finishing off a book, so she's not as active on list as she was, but she usually responds to direct questions to her, etc. > > So if anyone knows of anybody who's tried LDN on kids, I would LOVE to > hear about as many details and as many different cases as possible. > Any information anyone could give me would be really appreciated! > > And on a happy note, I'M GETTING MY LICENSE ON THURSDAY! Woot! > Assuming I pass the test, that is =) Yay you! Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 you could join the austism LDN group and email Dr. McCandless on list and ask her about it once you are on itGreat idea, thanks Mara!! Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 At 02:54 PM 7/26/2010, you wrote: I wasn't sure if LDN is still considered OT, Well, there are so many people on this list on LDN that it would be hard to make it OT unless it was SCD0illegal, which it isn't. Congrats on getting your license, WHEN you pass the test. Ask the doc what effects REMICADE can have on your development! — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 you could join the austism LDN group and email Dr. McCandless on list and ask her about it once you are on itGreat idea, thanks Mara!!...or not? The list seems rather strict about what you can post:"We gladly welcome anyone to the list who might benefit from the LDN files that were compiled from the postings of Dr. McCandless however this list is NOT for discussion of LDN and other illnesses - discussions should be limited to autism and LDN. "..."ANOTHER IMPORTANT RULE: This is not a "doctor is in" list. Dr. McCandless has asked that we NOT post questions directly to her on the list. "I guess I'll be perusing the files =) Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Alyssa, LDN is still in the experimental stage for IBD. The information from the autism board that would be of interest to your parents is the use of LDN in children. All of us have to consider the experimental part, but the bigger concern is how it is tolerated in young people and the side effects. I think you might get some of this info from the board- how many kids are on it, what side effects- and especially in teens- even if you won't get the GI part. Ultimately you and your parents are going to have to decide whether to use a drug that is in the experimental stage, the pros and cons, and any side effects. I think it will be a decision you and your parents will have to come to with knowing as much that can be known at this time. You might also want to contact the physicians who have studied LDN and ask them what they know of its use in teen girls. Perhaps they can be helpful. As a parent I would think your parents' biggest concern would be safety and side effects in kids your age. http://www.thefreelibrary.com/Low-dose+naltrexone+may+help+inflammatory+bowel+di\ sease-a0211561645 Congrats on getting your license!! My 15 y/o DD has her permit and can't wait!! I hope you feel better soon. PJ > > >> you could join the austism LDN group and email Dr. McCandless on list > >> and ask her about it once you are on it > > > > > > Great idea, thanks Mara!! > > > ...or not? The list seems rather strict about what you can post: > > " We gladly welcome anyone to the list who might benefit from the LDN > files that were compiled from the postings of Dr. McCandless however > this list is NOT for discussion of LDN and other illnesses - > discussions should be limited to autism and LDN. " > > ... > > " ANOTHER IMPORTANT RULE: This is not a " doctor is in " list. Dr. > McCandless has asked that we NOT post questions directly to her on the > list. " > > I guess I'll be perusing the files =) > > Cheers! > Alyssa 16 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Azathioprine 75 mg 1x per day > Prednisone 12.5 mg 1x per day (trying to wean!!!!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 you could join the austism LDN group and email Dr. McCandless on list and ask her about it once you are on itGreat idea, thanks Mara!!...or not? The list seems rather strict about what you can post:"We gladly welcome anyone to the list who might benefit from the LDN files that were compiled from the postings of Dr. McCandless however this list is NOT for discussion of LDN and other illnesses - discussions should be limited to! autism and LDN. "You can certainly ask her about in her view is LDN safe for kids - and if you are on the listfor a while, you will see that a lot of kids are on it. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Alyssa, It looks like Dr. Jill ’s Phase II study of youngsters is just wrapping up! <snip> Dr. ’s most recent research on the effects of LDN is a double-blind placebo controlled Phase ll study of youngsters from ages 6 to 17 with active Crohn’s disease. It was launched at Penn State in July 2008 and is expected to run until July 2010. Participants “will be treated with either naltrexone or placebo for the first 8 weeks then all subjects will receive active naltrexone drug the last 8 weeks.” For information about joining the trial, contact Bingaman, RN, at or sbingaman@.... (Please see the trial website.) From http://www.ldninfo.org/ldn_trials.htm Congrats when you get your license – look out world! She’s got wheels! Carol From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008 Alyssa, LDN is still in the experimental stage for IBD. The information from the autism board that would be of interest to your parents is the use of LDN in children. All of us have to consider the experimental part, but the bigger concern is how it is tolerated in young people and the side effects. I think you might get some of this info from the board- how many kids are on it, what side effects- and especially in teens- even if you won't get the GI part. Ultimately you and your parents are going to have to decide whether to use a drug that is in the experimental stage, the pros and cons, and any side effects. I think it will be a decision you and your parents will have to come to with knowing as much that can be known at this time. You might also want to contact the physicians who have studied LDN and ask them what they know of its use in teen girls. Perhaps they can be helpful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Congrats when you get your license – look out world! She’s got wheels!Hehe thanks! Although, I'll only have the ability to use wheels; sadly, no wheels of my own are in the future =( Oh well! And thanks so much for the link! This is perfect- doctor's love studies!! Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
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