LDN with kids
- Thread starter Mami
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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
http://www.crohnsforum.com/showthread.php?t=13919
Here's the original....
http://www.crohnsforum.com/showthread.php?t=11765
Last edited:
Kev
Senior Member
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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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.
AZMOM
Moderator
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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
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
- Joined
- Aug 8, 2009
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- 153
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.
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.
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!
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!
