Crohn's Disease Forum » Treatment » Low Dose Naltrexone » E's GI has asked me to send him links concerning LDN and its use in children?

07-08-2013, 02:46 PM   #1
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Charleigh's Avatar
Join Date: Nov 2012
Location: Southern USA

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E's GI has asked me to send him links concerning LDN and its use in children?

Does anyone have any links they can share? I really want to present a strong case. I love E's GI, but he is hesitant.

Thanks ya'll!
Mom to 4 incredible kids ~ 17, 15, 13, & 7
Including Incredible "E" ~ 15 year old Crohn's kid
Diagnosed at 11.
Enteral Nutrition
07-08-2013, 08:06 PM   #2
Jmrogers4's Avatar
here is the link to the pediatric study for children with Crohn's and LDN. There have only been the 2 studies and hopefully phase III will happen soon.

Here is a pdf of the whole study (post #22)

Here is the link to the phase III info
Hope they help let me know if he is looking for anything else in particular. Good luck

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues

Last edited by Jmrogers4; 07-08-2013 at 08:09 PM. Reason: added another link
07-09-2013, 06:29 PM   #3
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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I'd suggest you also download/printout the 1st and 2nd adult studies... even tho E is only 12... you never know what might tip the scales in your favour. And, yes, there have only been a couple of studies on LDN... but (and this is anecdotal, and my memory may be wrong) I've seen the big, expensive TV ads for one of the biologics (I won't use its brand name.. I think the medical name is adumilab).. and their script says that in two studies... how it was found to be effective in treating mild to moderate Crohns. Well, I hadn't guessed they only did 2 studies... maybe they did more.. but then why do they only say 2.. Now, they were probably very large scale, expensive studies.. but I'm just guessing. And, the success rates they mention in their ads (one showing a woman circling around public washrooms, another showing a man doing the same) are lower than LDN... Then they go into the potential side effect disclaimers.. pretty scary stuff.
This may sound off the wall... but if you could arrange it.. find those ads, burn them to DVD.. take a laptop to your GI's office.. and play their own commercials back to him/her.

Just one of my crazier ideas. And, it is a scary world out there for any parent whose son or daughter is diagnosed with this monster. And, the potential side effects of most meds are even scarier. Here's the thing with LDN. If you go that route, and find a dr to prescribe it... the risk is your child's condition will deteriorate... with no guarrantee that your child WILL be in the percentile for whom it works. However, the same risk applies to every other medication. None of the .. established.. drugs have a 100% success rate.
If your child does improve under LDN, the side effects that come with it are pretty mild by comparison, AND the dosage of the drug your child is taking is so low that long term use HAS to be safer than long term use of any other known drug. I have been on LDN for 5 1/2 years... every nite, full 4.5mg dose. I think that fairly and accurately sums up the risks and benefits of LDN. Except that, in some cases, pushing for it may jeopardize your existing doctor/patient relationship. Not a fault of LDN, more one of our medical profession. I hope that this doesn't come across as emotional arm twisting... it isn't. I pushed for this drug way back when because I wanted a safe drug for my kids should they ever develop Crohns. That hasn't happened (knock wood), but it was my biggest motivator. Hey, I'd love for others, especially kids, to benefit from my lab rat days, OK?

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014

Crohn's Disease Forum » Treatment » Low Dose Naltrexone » E's GI has asked me to send him links concerning LDN and its use in children?
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