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11-01-2010, 06:03 PM   #1
Mami
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Join Date: Oct 2010
LDN with kids

Has anyone tried LDN with their kids? I read something about it on CCFA and it looks interesting...
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Jamie, mami to Marilena 10
dx 10-7-10 Crohn's in terminal ileum

Pentasa 1000 mg
6 mp 12.5 mg
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11-01-2010, 07:50 PM   #2
Dexky
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Join Date: May 2010
Location: Kentucky

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Hey Jamie, here's a link to CowgirlNZ's thread. She tried LDN for her son but unfortunately this thread is near the end of their experiment I'm afraid. It doesn't seem to be working for him. She may have more info for you though!!

http://www.crohnsforum.com/showthread.php?t=13919


Here's the original....

http://www.crohnsforum.com/showthread.php?t=11765
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club

Last edited by Dexky; 11-01-2010 at 07:56 PM.
11-04-2010, 06:59 PM   #3
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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I think the only piece of advice I could offer is to look at all the drugs currently used to treat crohns.... and weigh 'their' pros and cons. I have seen no info regarding the use of LDN in treating children; but then... I've never seen/heard of a 'for children' form/version of any of the other drugs used to fight crohns. No drug out there is risk free, and one has to make some tuff choices in fighting this disease. And, regardless of which choice made, none offer 100% guarrantee they will work...
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
11-05-2010, 10:58 AM   #4
tannersmom
 
Join Date: Sep 2010
Location: prestonsburg, Kentucky
We took my son to Hershey Medical to be in a trial they were doing with LDN and children with crohn's. Unfortunately it did not help my son but they were reporting that is had helped some of the children who had finished the trial.
11-05-2010, 10:52 PM   #5
Mami
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Join Date: Oct 2010
Thanks All! Lots of meds to check out...
11-22-2010, 09:05 AM   #6
AZMOM
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Join Date: Nov 2010

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We haven't tried LDN personally (my daughter is 7) but I have read a lot about it. I know that the people it has worked for are big proponents of using it for Crohn's and personally, I'm thrilled for them that it has been successful. I guess my big issue with LDN is that a lot of people are advocating using it (and other things) against the advice of their physician, directing people to where they can just buy it off the internet, etc. That's where I get concerned....especially when it comes to the kiddos.

So I know I'm late posting on this one but my advice is be sure you have a good partnership with your doc and keep him/her informed if you are trying something new that wasn't prescribed.

Take Care,

Claire's Mom
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
11-22-2010, 12:57 PM   #7
DMS
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Join Date: Aug 2009
Location: Chilliwack, British Columbia
My son takes LDN, but also does Hyperbaric Oxygen Therapy and SCD, he has been in remission for awhile now, but still watches what he eats very carefully. It seems for us that LDN helped him, but did not get him into full remission, HBOT is definitely what pushed him into full remission - right now he is on a maintenance of HBOT at 2 to 3 times per week.

LDN was prescribed by our GI, he does not prescribe it very often and only at a parents request, but we wanted to try it - with the understanding that if it did nothing we would look at other options.
Just for the record HBOT has 30 years of clinical trials that show it controls inflammation (especially in hard to control areas such as the rectum). Our GI was thrilled that we were using HBOT in conjunction with meds, and has requested regular updates so HE can monitor it for his own information. Unfortunately it does not control symptoms (nausea, diarrhea, etc), our son had very few symptoms beyond his fistula and an ongoing elevated CRP, so HBOT was a good choice for us.
11-27-2010, 04:57 PM   #8
cowgirlnz
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Join Date: Jul 2010
Hi Jamie. Just catching up with this thread. Our five year old tried LDN recently for about 4 months. We had a few moments that looked hopeful, but his crohn's is quite severe and the LDN just didn't seem to be able to hold back the flares. Unfortunately we had to come off the LDN and start him on one of the stronger drugs that we'd been dreading.. We had the same result with the SCD diet too.
But I do still think it's worth trying these alternate therapies - they do work for some and it can't do any harm to try. Our son is five years old and could be fighting this disease for the rest of his life. In the bigger picture, four months out form 'traditional' treatments to try something new seems worth a shot.
I also wonder if we might have had more success with LDN if we'd started it whilst he was already in remission, as it does look like it may be better at keeping you in remission, but not so good at inducing remission. We may give it another shot further down the line.
Good luck!
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