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Xmdmom,
Caitlyn also started feeling better within a week. But I was told you have to give it at least six months for a true trial of efficacy.
 
xmdmom - I'm so glad he's seeing some positive results :D but, I agree that you really do need to give it some more time.

I wish him good wishes! in having this work for him! Please keep up posted! :)
 
Thanks a lot for your replies. In fact I have been in contact with Jill P Smith and she just told me that in their pediatric study they used the dosis if 0.1 mg per kg. The anti-TNF medicines were not allowed...

The biggest question for us at the moment is, should we start with Humira anyway and try the LDN at the same time. We also are afraid of possible flares (and he currently has them already) and putting him just to LND only may be too risky in his current situation (I mean he is VERY sick). We know that Imuran alone is not working, remicade did not work, so what to do next? Any suggestions?
 
Malgrave,

Have your son's GIs ever considered Enteral Nutrition (EN)? It is used very often in Europe as a first line treatment for children with Crohns. It has no side effects, provides all necessary nutrition, allows bowel rest, has anti-inflammatory and healing properties and has a comparable success rate as steroids at inducing remission! The NEGATIVE is that it requires replacing ALL food for a time period (usually around six weeks) with the EN formula only. :( The formula can be ingested orally (shakes) or through NG tube.

Please look under the Treatment section, Enteral Nutrition subforum. As well, there is a thread here in the parents's section - Kids on Enteral Nutrition. Both will provide you with lots of info. Links to both are below.

http://www.crohnsforum.com/forumdisplay.php?f=161

http://www.crohnsforum.com/showthread.php?t=36345

:)
 
Malgrave,
I just sent you a private message. Also what Tess is saying EN is something to also consider. You can even do that at the same time as LDN if you want. Some people have had success with that.
 
Thanks Tesscorm,

He has been on Nestle's Modulen IBD for 6 weeks 2 years ago.
Unfortunately he did not have any response to it :(
 
Well...just an update...i believe I have heard that the 2nd dr Jill study is scheduled to be published...also my doctor has read over all the material provided and also advised that he found one pediatric patient case in which LDN was documented to have "helped" her case ...at least in the short term. He still believes LDN is a "stretch" but stated he would not objected we obtained a prescription elsewhere and then he would continue to assess the results....I see this as a win. I would prefer that a skeptic be in charge of assessing the results. For now though...6 mp is still working....so LDN is on the shelf..but it's nice to know that it just stepped in line in front of remicade and humira!
 
I was in contact with Dr. Smith, and this is indeed the 2nd study that she published. Great to see the headway they are making!
 
Tenacity....the 2nd study I'm interested in is pediatric and is supposed to be published in the journal of clinical gastroenterology...date unknown by me...
Xmdmom.....she was hired by the national institute of health according to my wife as a senior scientific advisor for clinical research in charge of GI/Crohns and liver research...she was awarded professor emeritus atpenn state so her email address remains the same....
Source: email from her to a member of our Facebook LDN group.....so I guess the source is Jill smith herself..
 
There's seems to be a couple studies that people are interested in here.....I'm assuming that these Two published studies we're talking Aout have been published.....what s still up in the air is the use od LDN in pediatric patients and dr Jill smiths recent study on that is still pending publication....I think.
 
Correct I know she was still working on the pediatric one as of a few months ago when we were deciding what to try next.
 
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I guess...I have only really followed the pediatric trail ..so I was unaware there were already two.(or more for all I know)...
We are eagerly awaiting the pediatric results..(even though I believe that study was Crohns specific)...
 
Once again to inform any parents who are interested in LDN and how to convince their doctor...dr j. Smith would not discuss results or treatment with us...but did ask us to have our dr call her and she would provide him the answers he may need. Our dr did research the information we provided and is still skeptical due to lack of research....research that we all know will be slow to develop......since big pharma can't make $$ on this. Anyways he did say that he found a case with a documented pediatric patient treated by a colleague he knew somehow. And he said that all other meds failed her and LDN was a success....however....he only had short term info and does not know if LDN continued to be a success and / or for how long. But ..he confirmed it worked when traditional meds failed.....and I have yet to hear of any story where LDN caused any damage in and of itself......
 
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Hate to sound like a broken record (and many/most of you are probably too young to even get that reference), but this November will make 5 years I've been successfully treating my Crohns with LDN. The absolute only side effect I have ever experienced to date was the occasional vividly detailed dream. One of my principle motivations in trying LDN was to find a 'safer' treatment in case my children should one day develop this disease (there is a genetic factor that increases the risk of them getting it). Having said that, you have to take into account that I'm a full grown male playing guinea pig Vs a child trying it. But, when one objectively compares the risks of any of the traditional meds against LDN, the comparative safety of LDN stands out. However, there are risks.

Pushing for LDN may jeopardize the doctor/patient relationship. It isn't illegal, unethical or anything along those lines for a doctor to prescribe it for a patient, but it may damage their reputation amongst their peers. Conservative doctors take a dim view of any of their fellow physicians who follow unorthodox treatment regimens.

Once you have a prescription, I would strongly urge that you follow the guidelines set out in the studies, without deviation.... unless there is overwhelming reason to deviate.
The next thing you will need is a source... a pharmacy that knows how to compound this drug correctly. Make sure you get freshly compounded pills, and follow common sense storage N handling routines... no extremes of temperature, avoid exposure to sunlight, all the same good stuff you'd do with any other prescription medication. The next step is the hardest. Stick with the program until it works, or enough time has passed to demonstrate that it categorically isn't going to work. Like every other med out there, there is a percentage of people for whom it won't work, but it is a minority.
The downside of this is that... before it starts to work, symptoms can get progressively worse. I've heard (anecdotally, on this site) that it can be combined with other drugs to lessen symptoms. Doses of less than 10mg of pred were mentioned. There may be other drugs. The argument against combining it with other meds is that, when it works, how will you know which med is causing the magic. That sounds reasonable from the point of view of a researcher; not so much when it is you, the patient, who has to tuff it out. I did it solo, and it wasn't fun. This may be food for thought to any parents who are considering it for their children. I wouldn't steer you wrong, I'm a parent too.

Final thought. When the LDN stops the disease, it can't undo the damage caused by the disease AND it doesn't make one superman/woman (bulletproof). The disease is still there and one has to act accordingly. Rest, exercise, sensible diet, frequent follow-up with doctors.... with these exceptions, when it works, life can pretty much get back to being normal. Mine has. And that was something I'd almost given up hoping would ever happen.
 
Thanks- Kev
That was why we decided to try other options given the severity of our son at the time. WE really didn't have time to "Wait" for another drug to work.
Our GI was at least willing to talk to the researcher and then give us his take on how it would be given our child's history.
THis disease is very individualized so what may work for some has not worked for others. So glad this is given some another option. One thing to consider if your child has nothing else going on beside crohn's this is not an issue but when you add other medical issue cardio,pulmo, near etc...) then sometimes the doc may have concerns and you may want to find those first especially if you child is on more than one med.
 
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Don't have a lot to add we just started week 10 of LDN and I can say Jack certainly looks and feels better then I have seen since the diagnosis. Other people are commenting on how well he is looking. He has an appt Oct. 2 and I can not wait to see if the labs match what I'm physically seeing. I'm keeping all my fingers and toes crossed. If the labs look good we will continue on with the LDN and do a colonoscopy in a year to confirm that it is working.

We were lucky in his GI who was the one who brought up LDN and suggested we give it a try before trying one of the biologics apparently some they had prescribed it to some of their other pediatric patients and were seeing positive results.

My husbands GI won't prescribe it at this point but were hoping with positive tests results we can convince him. Seems like everytime he goes for blood work it comes back with elevated liver levels we wait 2 weeks go back for more blood work and it comes back fine.
 
Hi, I was on LDN more then 12 weeks! I used one pils, 50 mg,for about 11 days. Splited using syringe with water! Storage in refrigerator.
Parallel I was on antibiothiks. So at the end of this theatment I receive relaps. When stop taking LDN my antibiothiks started againe help me but not for long time. After 4,5 years I am started prednisolon.
It can help you but for me not. I was also surprised of information in Internet but this your health. Also this LDN make me strange for my family: I was nervios and etc. as positive - sleep well
 
Igor Sorry LDN did not work for you, seems likea high dosage. My son takes 1 pill at bed time that is only 4.5 mg. no side effects so far our at least he sleeps through them if there are. I hope you are feeling better soon
 
I believe due to language barrier u misunderstood...I think he is saying he breaks a standard 50 mg dose into 11 days worth....which would equal out to 4.5 mg or so...
 
Hi all,
I have been a way for a few days so I am catching up. Caitlyn is definitly having a flare up. I went to Skips pharmacy and had a long discussion with Skip. He is really nice and he also told me Dr. Smith will be working for the NIH like Dutch said. We discussed a few things including that even while on medication stress or other factors can induce a flare. The idea is to treat it quickly and get things back under control. He emphasized the importance of not stopping the LDN while treating the flare up with prednisone or any other way your doctor wants to treat it. This all makes sense to me. Meanwhile our new pediatrician called the new GI we will be seeing to get Caitlyn a faster appointment for early next week. The one bad thing is she never heard of LDN. Skip said he is happy to speak with her and educate her about it. Now if we could just get Caitlyn feeling well enough to go to school that would be awesome.
 
Hey Kim, I just wanted to let you know that we did go through this a little bit with Chloe. Twice she flared due to c diff and two other times she had flares that required prednisone. I was kind of bummed because I thought, "great, now what do we do"? However she has recovered from all of it, is currently doing well and we are still on Ldn. A few months ago she had an MRI. They were checking for any strictures, abscesses, fistulas but there we none. The report said the colon actually had a "more normal appearance than previous scan" however there was still some wall thickening and inflammation present. We are working to get that under control with a specialized curcumin supplement. Overall she is on an upward trend. It's almost like 2 steps forward one step back in the beginning though. I didn't mean to be so long winded I just wanted to encourage you. I know you said you'd treat the flare and stay on Ldn and that's great. We were determined to do the same thing and it's paid off for us. Chloe has gained weight, has color back in her face, rarely has any pain and is healing on the inside. I've been following Caitlin's story and I really wish the same for her. Take care!
 
Go to www.crohnsdad.com for all of his research and information. We have learned SO MUCH from him. He has suggestions on diet and supplements and using Ldn. Sadly he recently passed away from a massive heart attack. His daughter (whom he developed the protocol for) is working to continue the website. We do portions of his protocol and I do believe it has helped.
 
So, I'm wondering how long you wait to treat a flare with prednisone, while you're on LDN. It seems to me catching it early and treating with a short course might be the way to go. (In asthma, doctors put people on 5 day courses of high dose prednisone to take care of a flare.) The cons would be using prednisone unnecessarily for symptoms which would otherwise self resolve or missing an infection or other important issue.
What have you done? What are your thoughts?
 
We did a prednisone burst, 30 mgs for 5 or 6 days, and a week of flagl. We didn't mess with it. Sometimes with Chloe there is unexplained brief fever that goes away in a day. Sometimes she has a little pain that's likewise gone in a day. All these things are happening less and less though. I imagine this as the disease trying to break through but then being controlled by the medicine. However if we have fever, pain, fatigue and diarrhea then there's a flare. Twice now that flare has been caused by c diff. This is just our experience and I'm sure others have different symptoms. It's strange but Chloe can feel the difference now. Months ago when she was sick she knew it was c diff. She says it's a different kind of pain even though it's in the same place.
 
Little Chloe,
Thanks for letting me know about Allan (crohns dad) we had been emailing in May but I hadn't talked with him in a while. That is so sad. I just sent his daughter a message. I am so sorry to hear about her Dad he was such an advocate for her.
 
@LittleChloe..we are following Crohnsdad's guidelines with the supplements, and I was wondering do you ever give Chloe suppements at the same time you give the LDN. I just switched Olivia to capsule form (from TD) and wonder if giving supplements together with LDN will effect absorbtion??
Kim, I am so sorry Caitlyn is having a rough time right now. I hope the GI will be able to treat her swiftly and nip this flare in the bud! Kim
 
Livilou, we take the supplements spread out over mealtimes but if we forget something I will give it to her at night with her ldn. I don't think there's an absorption issue with supplements, at least that I'm aware of.
 
I'm going to stick my nose in (its the part of me that technically smells the most, but that is a totally different story) here. This is my personal belief. I believe that LDN, via the 4 hour rebound effect that it generates, allows my immune system to stave off my Crohns.
If that is indeed the case; then there are obvious weaknesses that have to be taken into account. First off, no ones immune system is bulletproof.. invincible.. superhuman. If you consider that a healty person can get c-diff, and get hit hard by it, then someone like us with an incurable chronic disease are every bit as vulnerable, if not more so. And you factor in that the immune system is a by-product (for want of a better term) of our GI tract... then even when our immune system is fighting for us, it isn't 100% to start. Who would you rathe have fighting for you.. Muhammed Ali today, or back in his prime? (I apologize for using that crude, but hopefully effective, analogy).
Just because I take LDN every nite doesn't mean I can't get c-diff, or e-coli, or any other of a never ending list of complications, virii, bacteria, etc.. And I (and all adults) have an advantage that children don't... the more we are exposed to over the years, the more we have developed resistance to. LDN doesn't influence that basic reality one iota. LDN is a great treatment, but it sure isn't a cure, and it shouldn't be considered a panacea.
 
Hi all thanks for the well wishes. I just hot our new pediatrician to prescribe entocort to hopefully nip this flare in the bid quickly.
 
So good to catch up here and read of then continued success you guys are having. :)

The knowledge and experience contained within this thread is a godsend and I would like to thank you all for taking the time to impart it to us all.

@kimmidwife: I hope Caitlyn responds well to the Entocort and is soon well and truly on top of things again, bless her...:hug:

Dusty. xxx
 
Hi all we are on day four of entocort and still Caitlyn is in pain. One thing intersesting with this flare she has only had blood once and the amount of times she is going is still staying pretty low about three per day. Past flares she had more blood and would be going eight or more times per day so I think the LDN is still helping to a point. we just need to get this flare under control.:(
 
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Kim, thinking of you and I hope you and Caitlyn have started to see some improvement by tonight! :ghug:
 
This looks optimistic...does anyone smarter than me know what it means exactly? Does it meant LDN will cost a fortune once they move forward? Does it mean dr Jill smith sold out for $$$?
Could this company be an Underling of a bigger pharma who plans to drop the ball and cease the advancement of LDN so that we don't stop buying remicade or any other expensive drug??
I feel optimistic but have so many conspiracy theory worries!
 
Yeah, I'm not very smart but I think at the least it would cost more money but then probably covered by insurance at that point, I know my insurance does not pay for his LDN now but at $30-$35 a month I'm okay with that.
I pulled up TNI Bio Tech's website and it looks like they study immunotherapy, so in my polly anna moment I'm hoping that Jill Smith thought they would have more resources to continue the studies.
But then maybe I'm just being the optimist that I am and they glass is neither half full nor half empty just room for more vodka :)
 
Kim, Is Caitlyn doing good? Your other posts are in Sept so I'm sure I missed a different thread with her condition. Did she get out of that flare ok?
 
Hi Brian's mom,
I have been posting in another thread in remission but in pain. I just posted there about an hour ago. I would rewrite it here but I really have to go to bed or I won't wake up to get the kids off to school.
 
We see Dr. James Rick at Children's hospital in Dayton, Ohio. We begged for Ldn and he let us have it. Chloe is still on it and still doing good.
 
Interesting that this thread was revived. I have been thinking a lot about LDN lately. I am currently on it as well for my fibromyalgia and I do think it helps somewhat. If I don't take it I feel a lot worse than if I do.
I was looking back at Caitlyn's old records unfortunate I don't have all of them but I was reviewing what I do have. Prior to LDN her small intestine looked like nasty shredded up hamburger. On her last colonoscopy one year ago exactly and one year after we started LDN her intestines show no inflammation and nice healthy mucosa throughout. So even though she is currently having issues (possibly not Crohn's related still trying to figure it out) I think the LDN has made a huge difference for her.
 

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