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David,
They have not but we are moving and when we get to her new doctor I will speak with him about doing a colonoscopy to check the healing progress.
 
David.....Im interested you bring that up because that seems to be the issue with my son......prednisone got the ball rolling in December after diagnosis....then on to 6mp....apparently symptom free and feeling well since.....but.....labs for calprotectin and lactoferrin indicate he still has intestinal inflammation.....dr describes it as possible "microscopic inflammation".... This has been enough for him to at least approach the topic of remicade. It is my belief that if a switch is determined to be necessary......we should at least attempt the LDN path. So....I too would be very curious As to the impact of LDN on the intestinal mucosa......any thoughts?
 
Dr. Jill Smith is a gastroenterology specialist and researcher at Penn State. She has done several studies related to crohns disease and LDN, including the one that convinced our GI to let us try it. Maybe she would be able to answer you question. It can't hurt to try. [email protected]. Let us know if you hear from her.
 
Dutch: Forgive me as I can't recall your sons dx, location, age, what you have already tried etc but my 12 year old daughter has Crohns mostly in her entire colon dx in February. She has been on Remicade and Prednisone. Once she weans off Prednisone inflammation and bleeding starts again.

Our doc decided it was time to add another drug. I asked him about LDN and Enteral Nutrition. He wasn't enthusiastic about LDN but was very enthusiastic about EN. He said that it used to be if the disease was mainly in the colon they wouldn't hold out much hope but now studies are showing it is a promising treatment regardless of location. He said EN could be just as successful as steroids at reducing inflammation but come with the added benefit of excellent mucosal healing and nutritional benefit.

We are only 12 days in so I can't confirm but what I can tell you is her number of BM's and bleeding has decreased significantly so I am holding out hope that this might be our magic.

There are quite a few threads (and experts) on here so you may want to check it out. It might be worth mentioning to your doc if you would like to postpone adding another drug.

And if I am late to the party and you already considered and nixed it sorry.
 
Crohnsinct......thank you......
Being new to this whole situation.....I'm confused....why would Crohns be the diagnosis vs. UC if the inflammation was colon targeted only? I thought that dAmage colon specific would indicate UC? Or does a biopsy sometimes reveal otherwise? In our case we have been loosely diagnosed with UC...with Crohns being a possibility ...severe inflammation of entire colon.......weaning off prednisone to 6mp was symptomaticly speaking successful so far. No Apparant bleeding....regular and typical bm's...our issue at the moment is still elevated labs relating to sed rate, calprotectin, and lactoferrin......
EN. Was discussed but dr did not think a 12 year old would be consistent and happy on such a treatment plan so he was not optimistic about it...nor was our son.
 
Dutch,

I can't answer your question re Crohns vs. UC, however, regarding EN, you may want to discuss using EN in combination with your son's medications.

When my son was diagnosed with Crohns (primarily small intestine but patches in his colon and duodenum), his treatment was exclusive EN (formula only - plus clear fluids such as broth, clear juice, freezies, etc.) for six weeks. His maintenance has continued to be EN at 1/2 dose with a regular diet added back. However, I know of, at least, one member (imaboveitall 's daughter, Violet) who was treated with EN but did not have her diet restricted at all. As Crohnsinct explained, it does have healing properties and will provide nutrition.

The formula can be ingested either orally (a number of shakes are available) or through NG tube (usually overnight). My son has his through NG tube - he had no problem learning to insert the tube, literally takes seconds, and formula is all ingested while he sleeps. Along with Crohnsinct's daugher, there are a few other children, around your son's age, who have also used EN recently - Twiggy930, mom2oneboy, sascot - their threads may provide you with a bit more info.
 
Also, re the LDN... I have also asked my son's GIs their thoughts - his 'regular' GI was fairly dismissive - not enough studies, thought study had 'holes', knew of one patient who tried it unsuccessfully. I also asked the 'on-call' GI we last saw and while he hadn't heard of it, he quickly looked up some info (I thought his comment was relevant as it is our 'children' who are being treated) - his thoughts were that as it is not a commonly used drug for Crohns, he believed 'pediatric' GIs would be less likely to want to take the chance, that they would usually take a more traditional treatment. And, in our case, as my son is transferring to an adult GI next month, he suggested that an adult GI might be more open to trying LDN whenever my son needs a different treatment... just a 'perspective' to consider when speaking to a 'ped' GI re the LDN.
 
Dutch: UC vs. Crohns...the way our doc described it, the colonoscopy along with biopsies would give us a definitive diagnosis of Crohns or UC. I think UC has just the top most lining of the intestine affected where as Crohns goes much deeper through all the linings. Also, there is the appearance...cobblestone vs skip etc. In any case all signs pointed to Crohns for our daughter and the biopsies confirmed it. That said, I still wonder if it could be UC as her symptoms tend to be more like UC. Our doc says it doesn't matter as he treats both the same unless the decision for surgery comes up and we are no where near that at this point.

Our doc also said compliance is a huge issue with EN. Why not just try a day first? That is what we did. She tried 6 shakes in a day with nothing else other than water. She used Boost and Ensure and didn't really mind the taste so we went forward. She is a picky eater and we are Italian and our world revolves around food so you could have knocked me over with a feather when she said it wasn't that bad and she wanted to go for it. Hunger was an issue the first couple of days but now she is in a groove and all seems to be good. Can't argue with the results in the toilet either and I mentioned it because of your mucosal healing comment as that is what has our doc so jazzed about EN.

Not trying to push you with it but like you I was not too enthusiastic to pump more drugs into my 12 year old's body and figured EN can't hurt so why not try. So what if she only got through a week or two...at least we tried and there was no harm and only possible help.

Good luck with whatever you decide. Sending lots of positive thoughts and prayer your way.
 
UGH! Not meaning to hijack the LDN thread but one last note: as we discussed with our doc you rarely come off the drugs once they are added. They are pretty much a permanent fix as long as they are working. EN is a temporary thing. For instance, the exclusive initial period is 6-12 weeks...our daughter is 6 weeks. It works and they slowly reintroduce food and happily go a long until symptoms return or labs or imaging indicates inflammation etc in which case they hop back on EN for a period of time...but it isn't constant. There is the possibility of keeping a maintenance dose (two shakes a day or a certain volume by NG tube) once transitioned off and that seems to be having some success in increasing the duration between "exclusive" EN periods.
 
I'll toss in 2 cents worth.. Granted, treatment for UC and Crohns are indistinguishable, but.. and it could be a crucial but... (I know, been there, discussed it with many GI's) it is best if the doctors confirm whether it is one or the other, because if it is mis-labeled UC, and some eager, bright eyed young GI surgeon swears up and down that a colostomy will cure UC, that is accurate. But, if it is Crohns Colitis, or Crohns Colitis and Ulcerative Colitis collectively (or, as in my case, some rare mutant cross breed of both) then taking the colon out of the equation will most likely move the Crohns up the GI tract till it is no longer colitis, but Crohns Disease. That ain't good!!!
 
My daughters doctor was also very unenthusiastic about ldn. It room a lot of convincing on my part. Her labs have all normalized. She is down to one to two Bm per day. She is feeling better then she has since she was first diagnosed. I am certainly convinced of its effectiveness. I will ask her doctor about the lactoferrin test as he has never recommendEd it.
 
Amen Kev! That is why our doc says it isn't that important to him until you start considering surgery. He explained it the same way you did!
 
Hi all...thought I'd toss in my .02:

We are facing this exact scenario: Izz presents like UC; severe inflammation in the colon only. She had a biopsy come back positive for a granuloma during her first scope, which makes her diagnosis Crohns. Again, it didn't matter as we were only treating her. Now that she is facing surgery, it *does* make a difference; however, we are told by both our surgeon AND 3 peds GI's that kids with Crohns colitis tend to do very well post op, with minimal spread of the disease. The biggest difference is whether her ileostomy will be permanent or temporary, and the surgeon will leave the rectum intact in preperation for future surgeries regardless. HTH!
 
Pardon my ignorance... :blush: but, is it at all possible for a biopsy to come back positive for a granuloma and still not be crohns? Can anything else result in a positive result, even if not UC?
 
When my son's biopsy showed granulomas, the GI thought about chronic granulomatous disease, but he has not had frequent serious infections like pneumonia to indicate it. Later, the upper-GI flouroscopy showed TI inflammation to confirm Crohn's dx
 
I would heartily suggest to anyone considering LDN not to throw in the towel without going on the 4.5 mg dosage for 12 - 14 weeks minimum. And, if you do go on it, and your symptoms increase in severity, I would still strongly urge you to try to hold out for that same period of time. Whether Naltrexone suppresses your immune response, or causes it to reset, or creates just a temporary rebound effect (how it works depends on who you listen to, and I'm not sure anyone knows exactly how it does what it does) the thing of it is that, in and of itself... it doesn't attack your IBD directly. To try to clarify (and bear in mind I'm strictly a layman here, no medical training of any kind to back this up)... imagine... your disease suddenly isn't presented with the typical meds that are used to try to halt its progress. It's like a holiday... and it will probably want to party. Slowly, gradually, the Naltrexone gives your body a fighting chance to put the disease in its place... then the battle really begins. And, for a large percentage of people who have tuffed it out, LDN will stop IBD. And continue to do so with no dangerous effects to worry about in the long term (at least none known so far, and I've got almost 4 1/2 years of experience to back up that statement). If, after 12 - 14 weeks, you've seen no improvement, then either 4.5 mg of LDN isn't going to work for you, or it wasn't the right type or dosage, or you've had other issues... like candida overgrowth, that got in the way. That is the gamble, and it isn't to be taken lightly. But, if you hit the jackpot then you're laughing. Seriously. Pre LDN, I was lucky to get a... reprieve.. remission.. that lasted a week or two tops. I never imagined that LDN would keep me going as long as it had. From what I was told, many other meds with all those complications typically only worked 2 - 3 years before results plummeted. And they still created side effects to keep one up nights. I'm dealing with that now from my trials on AZA. And it ain't nice.
 
Crohn's V UC.

Dutch the advice you have been given is spot on in all regards. Crohn's Colitis and Ulcerative Colitis are treated the same way until surgery is required and it is at that point that a definitive diagnosis is crucial.

The presence of granuloma's is still the gold standard when it comes to nailing a diagnosis of Crohn's but not all of those with Crohn's will have granuloma's present as is the case with my son. As a result all of his pathology states no convincing evidence of crohn's disease. On the flip side though, granuloma's are not a feature of UC.

Dusty. xxx
 
We were tested for chronic granulomatous disease last month, along with a host of other obscure diseases by infectious disease docs. :)
@Tess, I am hoping lol! If her granuloma was caused by something OTHER than Crohns, she may have UC and be cured by surgery/her surgery may be reversible!
 
:sign0085:
Question as GI is switching my son to ldn next month, he is currently on Imuran, does he need to be weaned off the Imuran or can he stop taking it and start taking the ldn? I keep reading about compounding pharmacies to get ldn, can you not get at your typical Walgreens or Costco pharmacy? Sorry for all the questions I do not know anything about ldn but after reading these posts I'm hopeful.
Jacqui
Mom to Jack dx Crohns 1/2010
Husband dx Crohns 3/1993
 
Hi Jacqui,

I have no experience with LDN but will tag kimmidwife and Kev. Hopefully they will be able to answer your questions. Good luck!

Dusty. xxx
 
You can only get LDN at a compounding pharmacy. Go to compoundingpharmacies.org to find one near you. You can can also visit the website Lowdosenaltrexone.org for information on pharmacies that can compound the drug. I don't know about how to wean or go off of other drugs but if your GI is suggesting LDN you are fortunate. He probably knows what to do. You may find some helpful information on ldnscience.com. Best to you!
 
I, too, have no definite, concrete info on mixing other drugs with LDN, aside from 5-ASA. I have been taking LDN (4.5mg) with 4g of 5-ASA for almost 4 1/2 years. I had been taking the 5-ASA before starting LDN in Nov of 07, but with no noticeable benefits. I think my GI asked me to continue with the 5-ASA when she started me on LDN as she figured that it wouldn't hurt, might possibly help, and if the LDN experiment blew up in our collective faces then AT least she could claim she hadn't removed me completely from traditional treatments. Seen from her perspective, she was taking a very big risk. Fortunately, it paid off. The LDN turned my life around. And without all of those nasty side effects or possible long term complications that all the other drugs come with. It isn't for everyone, it doesn't work in 100% of the people that can get it, but if you are at a crossroads, or there have been complications; LDN is certainly worth consideration. First, you need a doctor to prescribe it. Then, you need a compounding pharmacy equipped with a device known here as a 'hood'... Naltrexone isn't available in the dosages prescribed for IBD (Crohns, UC, etc) from the manufacturer, so it has to be custom made (from 50mg pills or bulk powder). It has to be Naltrexone, and not the time release version Naltrexone SR. The compounding pharmacy has to know what has to be done... or be able to source that info. And the compound has to be fresh (or at least that has been my personal experience). I never take pills more than 90 days old EVER!.
Aside from that, there are a couple of warnings that I would like to pass along to anyone considering it. Make sure you have the right compound, then be prepared that you may feel worse, even MUCH worse, before things start to improve. If that is the way it plays out for you, my personal advice is to ride it out, stick with the program for at least 10 - 12 weeks. If it hasn't worked its majic by then, either you fall into the small percentage for whom LDN doesn't work, or you have one of those issues (maybe an overbloom of candida) which interferes with LDN, or someone gave you a bad batch.
I know LDN can work, I am living proof it does work, and I've been on it that long that I can state you don't have to worry about any other those nasty side effects all the other drugs warn you about. That is the beauty about going with LDN, especially if you are dealing with a diagnosis at an early age. When you look at the long road ahead, it just such a relief knowing that you don't have to lose sleep worrying over the 'potential' risks that the other drugs carry. That is a peace of mind that is too prescious to miss.
 
Thanks, Kev. I've looked into compounding pharmacies here and there is one so I'll make sure they have the right naltrexone and can do it correctly. Hopefully since he is not flaring and feeling well that it will start working before there is an issue.
 
I am so glad your doctor is willing to consider it. If you can't find a good compounding pharmacy near you mine here in St. Louis will mail the medication anywhere in the USA. They are wonderful and very knowledgeable let me know if you want the phone number. LDN has been our miracle I hope it will be for your son as well!
 
So cool to hear LDN is working for you all! And even cooler to hear a ped GI is bringing it up on their own! I hope it becomes more main stream by the time O may need something else. Thanks again to you trailblazers!
 
Kimmidwife, I would love the number to your pharmacy I guess I'm always of the opinion to have more then I need and if I can not get it here in Idaho I can quickly get from your pharmacy.
We have been thrilled with our Pediatric GI would highly recommend him to anyone in the area. His primary concern truly seems to be the child and he always spends time explaining our options and why he thinks a particular treatment will work.
 
Ladue Pharmacy: 314-993-4031. Tell them a friend gets LDN for her daughter there and you would like to as well. They accept insurance and are really nice!
 
Hey Kimmidwife

You said this pharmacy accepts insurance for LDN? That is news worthy. I was told that custom compounds for unapproved uses couldn't obtain a DIN, and without a DIN, insurance wouldn't cover it. Mind you, I pay less than $1 a pill, but if theres some way I can keep that in my pocket, I could find use for $365 per year. Did they give you a DIN?
 
Thank you. I'm with Kev while I'm willing to pay if insurance does not cover it, but I could certainly find a use for the money if they do. :D
 
I don't know about any din. they asked for my insurance card and I gave it. they told me the insurance does not pay for the castle in the filler. so I end up paying 10 dollars for that. with my copay I am leaving about 8 dollars. they charge 1 dollar per pill. so for now at least they take the insurance. the manager did tell me that the insurance does not pay a lot. and they may stop taking the insurance. but for an extra few pennies a month I don't care I'll pay it.
 
Well, I 'believe' that DIN stands for Drug Identification Number. (just me ASS-zooming). Like, my Salofalk has an 8 digit DIN number 02112787. Apparently it identifies exactly what the drug is without a computer needing to know brand name, generic equivalent, etc., and I have been told here by numerous pharmacies that there are no DIN's generated for custom compounds. Since the pharmacy is charging you for filler and capsules, what I think is happening is they are charging the insurance company based on the DIN for bulk Naltrexone. As far as I know, there is nothing wrong with doing that, and it seems like a great way to lower the cost legitimately. Again, I'm ASS...oh, you know. Regardless, a buck a day to say my life isn't going to bankrupt me.... yet.
 
I agree Kev even if my insurance was not covering it we would still get it.
I wanted to tell everyone we saw Caitlyn's doctor today for the first time since she started the LDN (her appts kept getting cancelled or messed up until today). He could not believe how fantastic she is doing. I asked him if we need to do any testing and he said he believes in going by symptoms and did not feel any tests were necessary at this point. Anyway he is extremely happy with her and I told him I hoped he would recommend it to other patients so hopefully he will!
 
That's fantastic Kim! Please keep us posted on her progress. I hope Jack does as well after he starts on it.
Jacqui
 
Hey, really great news... Isn't it a simply wonderful feeling? Enjoy it, revel in it, and from my perspective, I think your doctors approach is spot on. Like, if you'd feel better about it, maybe suggest periodic bloodwork every six months or so, perhaps even a scope after a year or 2. Thing of it is, I suspect Caitlyn is going to continue to feel better and better, and start behaving like a normal, healthy child. Sorry, I can't help you with that... ;-)
 
That's fab news, glad she is doing so well. :D Our IBD nurse just said yesterday there was no data on it and they had never used it on paediatric patients so there's not much chance. will wait and see
 
Ascot,
you may have to fight for it. we sure did. I refused to back down and our doctor finally agreed to let us try it.
 
Y'all are making me love our Ped GI even more for being the one to suggest this and I don't have to fight for it. We are even planning on talking to husbands GI and see if we can get him on LDN as well. I think we will have more of a fight there. The husband wants to wait and see how Jack does on it first before he goes there.
 
I wouldnt wait for more proof on LDN. We started our daughter at 16, around 9 months before we could find a doctor to work with us. No side effects, and a clear improvement in symptoms and blood inflammation levels. I still would not rely on it as a sole strategy. A diet like paleo or scd would be great, but at least go gluten free, getting vitamin d levels up to 80, and curcumin/bcm95 would be good companions.
 
BCM95 is the most bioavailability form of curcumin which is an extract of turmeric the spice. It's a pretty effective anti-inflammatory that is a natural tnf blocker with anti cancer properties. It's been shown to help heal the gut lining in IBD patients. http://www.ncbi.nlm.nih.gov/pubmed/22392462## & http://www.ncbi.nlm.nih.gov/pubmed/22472795

I wouldn't call it a cure, but along with things like the right diet and LDN, it helps.
 
Very nice! I've taken tumeric in the past and felt it helped but stopped because my wife said my breath smelled like death. :(

Do you have a suggestion on a specific brand of BCM95 to take?

Thanks Alan!
 
Do you follow the dose recommendation on the bottle? I'm currently taking Meriva Phytosome Curcumins. Is the BCM95 superior to this?
 
The folks that make bcm95 claim that its better than Meriva so it's hard to know for sure. Meriva is probably a good choice as well. My daughter takes 500 mg. per day (2 capsules).
 
Alan,
Thanks for the recommendation. Like your daughter mine is very picky. She is a picky eater and very difficult to get to take any extra pills. Thank G-d the LDN is working for her. At this point I don't think I will push her with anything else as long as she continues to do well. Maybe when she comes home from camp I will try to start her back on the vitamins and supplements.
I wish I could get my husband to follow the paleo diet. Once the kids leave for camp I may try to get us both on it.
 
kimmidwife said:
I agree Kev even if my insurance was not covering it we would still get it.
I wanted to tell everyone we saw Caitlyn's doctor today for the first time since she started the LDN (her appts kept getting cancelled or messed up until today). He could not believe how fantastic she is doing. I asked him if we need to do any testing and he said he believes in going by symptoms and did not feel any tests were necessary at this point. Anyway he is extremely happy with her and I told him I hoped he would recommend it to other patients so hopefully he will!
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I've never heard of any GI doctor not following a patient that is taking medication and having this disease without doing any bloodwork to follow along. We have labs every 3 months...and did so when we were on the mild drugs and before the big gun; Humira. Even if Brian was on LDN, I'd want lab work. Its just too important to know for sure what's going on in their bodies. Also, Our GI said LDN is for very mild crohn's cases. And not much research to back up any of the claims. I wish our case could be as easy as yours seems to be.
 
Brian's mom,
Caitlyn has severe crohns and has not had an easy time of it. She has gone through a lot including surgery. She is allergic to many of the regular crohns medications. I have posted her story in earlier threads. Our doctor is not currently doing bloodwork number one because we are in the middle of moving and switching to a new doctor and number two he really believes in looking at the patient and not just the numbers. He did tell us she should have blood work done when we see the new doctor. We have to see her primary care doctor first and then will get a referral for a new GI doctor.
 
I wanted to weigh in on this also because it's important not to misunderstand. I don't know why a gi would say Ldn is for mild crohns but my daughter is on Ldn and was diagnosed moderate to severe. Ldn is a powerful medicine. Im not saying it works for every case but I am saying that it has the potential to work in tough cases. We are proof of that.
 
Thanks Little Chloe and Ctrl z I appreciate your piping in. Caitlyn has had such a rough time and gone through so much that I was a little bit upset by what Brian's mom said.
 
Hi, I was just wondering if you know where I could get any background info on the LDN - any trials, info on using with paediatric patients, etc. My son is between meds and I really don't want to give him the 6mp, so I thought I might try to ask the GI doc again about LDN
 
Sascot....
Currently..the best way to get info on LDN is by googling it and reading info from dr Jill smith at Penn State...so Far I believe hers is the only pediatric study that has been done.....I would not hold your breath waiting for more studies because from my research I believe the pharmaceuticals will do anything to prevent this drug from getting a proper look see....they stand to lose a LOT of money if it works because it is cheap and patent free.
Anyways...I think the best place to get info on its results is right here..also you can use Facebook and join groups of people using and or interested in LDN....there you will hear their stories...of success...of failure....of arguments with doctors who don't want to prescribe it......the results of dr Jill smith's studies were not published yet, to my knowledge at least......
Hopefully someone here may know more about where to get Info...
 
PS..I'm know what you mean about not wanting to use 6mp....but I must say...we have been using it now for aBout 6 months...having some minor liver issues which will hopefully resolve in the next month......the results for us have been good. Our son has severe UC which had dominated his entire colon.....since the prednisone knocked it out we have used 6 mp and a side dose of pentasa and he has been symptom free and looking and feeling well...re gained all his weight...no more vomit...no more diarrhea .......active again....anemia gone.....so it is a scary drug..but has surely helped us.
Hope this helps.
 
My son has moderate to severe crohn's and his doctor suggested and put him on LDN. We are doing blood tests after 3 months on LDN (October) and if it looks good at that point we would probably not do another blood test for a year unless there was an issue as long as he is feeling well. We may do a colonoscopy in a year to verify there is not inflammation but then yearly blood tests. I think since there is not all the side effects from other medicines as long as Jack is feeling well there is no need for extra labs.
They have been prescribing LDN for about a year at his Pediatric GI and have seen great results so far. Jack seems to be doing extremely well on it.
 
This thread in the LDN forum has links regarding LDN but most information seems to link back to the study done at Penn State.

Dusty. :)
 
Jmrogers4 said:
My son has moderate to severe crohn's and his doctor suggested and put him on LDN. We are doing blood tests after 3 months on LDN (October) and if it looks good at that point we would probably not do another blood test for a year unless there was an issue as long as he is feeling well. We may do a colonoscopy in a year to verify there is not inflammation but then yearly blood tests. I think since there is not all the side effects from other medicines as long as Jack is feeling well there is no need for extra labs.
They have been prescribing LDN for about a year at his Pediatric GI and have seen great results so far. Jack seems to be doing extremely well on it.
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Interesting....if you don't mind me asking is your GI a typical GI? Or more of a naturalist type dr who favors homeopathic remedy? Small office or big university Hospital? Just curious because so far it seems like most people have had to kick and scream to get LDN..and you are the first I've heard who,had it suggested by the GI....
 
We live in Boise and there is only one Pediatric GI office in town, they are associated with a big hospital and we started with the traditional azathioprine along with prednisone, tried methotrexate, had a reaction and back on the azathioprine. I was quite surprised when he suggested LDN and said they were putting other kids on it and had seen good results, whether someone fought to have their child put on it and those they were impressed with the results enough to try it with other patients I'm not sure. I will definitely be asking when we go for appt. in October. I know he said he had read the research on trials on it and had seen good results with other patients.
I do know that the adult GI community doesn't seem to be on board with it. My husband has Crohn's as well and his doctor says no. So we are keeping journal/research with his labs, etc. to convince his doctor to give it a try.
 
Dutch941 said:
Interesting....if you don't mind me asking is your GI a typical GI? Or more of a naturalist type dr who favors homeopathic remedy? Small office or big university Hospital? Just curious because so far it seems like most people have had to kick and scream to get LDN..and you are the first I've heard who,had it suggested by the GI....
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Hi. My son was first given LDN about 1.5 years ago by an MD that was into alternative treatments - we did not ask for it and never heard of it. We only tried it for about one month. Just last month my son's ped GI that works at NYC Columbia/NYP Childrens Hospital suggested LDN to us. He said we would need to try it for at least 3 months to see if it helps. I think it may becoming a bit more popular.
 
Couple of things. I found out about LDN via a link posted on this website to Dr Jill Smiths 1st clinical trial published in the American Journal of Gastro-enterology. That was back in early to mid 2007. So, that study was definitely published, and can still be reviewed. The general public can see the summary; members of the Journal can see all the material. And I can't swear that it covered moderate to severe... simply because risking a patient with very severe disease with an untried drug or a placebo .. well, you can see the concerns it would raise. However, I do know my case was severe, and I've posted internal photos of the damage this disease did to me to back that up, and the LDN stopped my disease in its tracks... dating back to Nov of 2007. That is what LDN can do. And, it lacks that... how to put it succinctly? ... game of Russian Roulette that comes along with taking the more traditional meds for treating this disease. If I were to guess (and why not, bearing in mind that it is only a guess) I suspect that is why pediatric GI's treating Crohns in children are getting on board with LDN. The long term scenario is much brighter.
 
Caitlyn is home from camp! I am so happy she is home I missed her soooo much. She is feeling good and had a fantastic time. Her only complaint is some mild joint pain but she has been super active so it may just be she was overdoing it a bit. :)
 
kimmidwife said:
Thanks Little Chloe and Ctrl z I appreciate your piping in. Caitlyn has had such a rough time and gone through so much that I was a little bit upset by what Brian's mom said.
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Sorry, Didn't mean to offend you or anyone. Just was quoting what our doctor said when I brought up LDN. I wasn't poo pooing it...My last thing I said was "wish our case was as easy as yours seems to be". I was wishing we didn't have to do the Humira. And that our doctor won't try anything but TNF blockers. In KC we have Children's Mercy...not much else to go.

We go again on the 15th....I'll bring it up again and take some info. I'll let you know what they say.

There are people going so far as having surgery, stem cell transplants...all these dangerous TNF blockers, etc....why isn't LDN looked at by all GI doctors. People come from several states away to see the GI clinic we go to at Children's Mercy. They do clinical trials there...I'm just confused by the whole thing.

BUT, I'm never out to hurt anyone's feelings. We're in this together...for forever it looks like. I'm also frustrated at the whole, "This will be cured in the next 10 years"....isn't the world past that mark yet???? Sorry so grumbly. I hate this disease with everything in me.
 
Also, one more question before we go on Wed. I've looked at the links that Kev and the others talk about. Why are they so old? Why not anything in 2009, 2010, 2011, or 2012. Maybe I'm looking in the wrong place. I don't want to take info in to my doctor that is dated 2007. Thanks to whoever answers
 
Kev - I have the utmost respect for you and am so glad your treatment plan has worked well. You are clearly one of the LDN experts around here and it's great that you post on the parents' forum.

One of the things I value most here is the ability to ask questions as we all have the same goal.....to give our children the best quality of life they can have until they are old enough to make their own treatment decisions.

For those of us whose routes have included more "traditional" medications than LDN, I would ask that we try to avoid verbiage like "Russian roulette". These are difficult decisions and not a soul here finds them easy nor do we play "Russian roulette" with our children.

Thanks for listening and this thread is a reminder to all of us that every path is different.

Hugs,

J.
 
Kathy,

Here's a link to a recent article in Canada's CCFC publication discussing LDN in a positive light. In the article, a medical professional in the GI field (forget his title), said that while LDN knowledge/treatment may be in early stages, he did feel it was worth discussing LDN with your GI as a possible treatment option.


Also, I'm sorry you're feeling down about this all. How is Brian doing? :ghug: I'm also hoping that Stephen can give LDN a try before moving on to meds... asked two ped GIs at his 'last' clinic (in the midst of a transfer to the adult clinic) and both commented that I would likely find that ped GIs will be more inclined to use traditional meds rather than 'alternative' meds on children. As Stephen's transfer was imminent, they suggested I might have better luck discussing it with his new adult GI.

Good luck at the next apptmt! :ghug:

http://efile.ccfc.ca/ccfc/2012JournalEngVol2.html
 
We just got a prescription for LDN from an internist for my 19 year old son; neither adult GI MDs wanted to write it. I gave the internist copies of the articles by Jill Smith 2007 and 2011. She told me she would look at them and then called me back a week later. She said she had no difficulty prescribing it. She mentioned she found info on it on a traditional medicine site (I think "Uptodate") We sought this internist out because she has a reputation for being open to alternative/complementary therapy. I think providing the papers is helpful.

Here is the placebo controlled study http://crohnsdad.files.wordpress.com/2011/12/ldncrohns2011.pdf
and the abstract for the 2007 study http://www.nature.com/ajg/journal/v102/n4/abs/ajg2007152a.html

Best wishes.
 
So glad you were able to obtain the LDN for your son!! I hope he responds well to it!

Please let us know how he gets on with it. :)
 
Thanks xmdmom, I'm printing those out.Just in case they want to start meds with my Grace. Were these the only papers you took for LDN or were their others?
 
I may have overstated the risks associated with taking traditional meds when I used the phrase 'Russian Roulette'. But at the moment, aside from my Crohns which is now under controll I have to deal with the 'repercussions' of the traditional meds I took before LDN. I really don't think it is fair to have found something that stopped my disease only to then be faced with not one, but two forms of cancer which my doctors told me might happen. I have been extremely fortunate in that my doctors have taken an extremely proactive stance; and that both were caught in the early, pre-cancerous stages. But I'm not sure how long my luck will last. So, granted, I've an axe to grind with traditional meds, but I think I've got adequate reason to feel that way... and I would be terribly remiss if I didn't voice this caveat. Those issues that they mention briefly in all of the ads, literature, etc., you know... their official disclaimers about possible side effects.. sometimes they do occur. The 'fact' that the 'traditional' medicos, scientists, experts in the field of IBD are literally shunning LDN as a treatment ... five years after it was found.. when it poses quite possibly the lowest risk of any successful treatment pisses me off. And, please, consider this. I've got my prescription, my disease is in check, I've no stock in the company that makes Naltrexone... I could just sit back and keep my big mouth shut. (or at least avoid the keyboard). But I'm not sure I could live with that fellow... you know what I mean? Like, I'm not trying to twist anyones arm about going the LDN route. There are risks, and everyone is entitled to choose their own path. But I firmly believe I owe something for my good fortune. And I see getting the word out AND trying to ensure that an accurate protrayal of the pros and cons of opting to go with LDN as the debt I need to pay. That is my sole reason for dropping in here from time to time. I (thanks to LDN) really have nothing to gain personally by being here. Unless this site starts offering a section about dealing with bowel or skin cancer. OK, I'm poking fun at my 'potential' conditions. Just don't want to see someone else on here having to do likewise because they didn't know there were alternatives, other options available. OK?
 
xmdmom said:
She mentioned she found info on it on a traditional medicine site (I think "Uptodate") We sought this internist out because she has a reputation for being open to alternative/complementary therapy. I think providing the papers is helpful.
Click to expand...
I have access to Uptodate and was curious what it said about LDN. It has the normal info for Naltrexone of course, but for Crohn's and LDN it says:
Low dose naltrexone — Naltrexone, used at the very low dose of 4.5 mg nightly, was studied in Crohn's disease based on the idea that endogenous opioids and agonists may have a role in tissue repair as well as immunologic effects. A single center open label trial in active Crohn's disease suggested a significant benefit.
Click to expand...
The study it cites:
PubMed
TI
Low-dose naltrexone therapy improves active Crohn's disease.
AU
Smith JP, Stock H, Bingaman S, Mauger D, Rogosnitzky M, Zagon IS
SO
Am J Gastroenterol. 2007;102(4):820.

OBJECTIVES: Endogenous opioids and opioid antagonists have been shown to play a role in healing and repair of tissues. In an open-labeled pilot prospective trial, the safety and efficacy of low-dose naltrexone (LDN), an opioid antagonist, were tested in patients with active Crohn's disease.
METHODS: Eligible subjects with histologically and endoscopically confirmed active Crohn's disease activity index (CDAI) score of 220-450 were enrolled in a study using 4.5 mg naltrexone/day. Infliximab was not allowed for a minimum of 8 wk prior to study initiation. Other therapy for Crohn's disease that was at a stable dose for 4 wk prior to enrollment was continued at the same doses. Patients completed the inflammatory bowel disease questionnaire (IBDQ) and the short-form (SF-36) quality of life surveys and CDAI scores were assessed pretreatment, every 4 wk on therapy and 4 wk after completion of the study drug. Drug was administered by mouth each evening for a 12-wk period.
RESULTS: Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P<0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients.
CONCLUSIONS: LDN therapy appears effective and safe in subjects with active Crohn's disease. Further studies are needed to explore the use of this compound.
AD
Department of Medicine, Pennsylvania State University College of Medicine, Hershey, Pennsylvania 17033, USA.
PMID
17222320
Click to expand...
 
Kev, I for one thank you for you presence on this board....I put much thought into every decision we make and have used you insight to make several decisions already. I believe it was you who thought it unwise to switch from 6mp to LDN when the 6mp was currently working.....and so, I did not. Please, keep gracing us with your insight and experience..negative and positive. If only more people would share we would have a more thorough idea of what I'd helping and what is hurting..thanks again.
 
The ironic thing to me is not a single study has shown statistical significance that mesalamine (think Lialda, Pentasa, Asacol, etc) is efficacious for Crohn's disease in any meaningful way and a Cochrane review absolutely destroyed it as a treatment option. Yet GIs prescribe it left and right off-label, sometimes as the ONLY treatment which makes me cringe. Whereas LDN shows statistical significance (granted, small trials, but you have to start somewhere) and GIs are often vehemently opposed to it.
 
Kev - I'm glad you're here too. I'm just hypersensitive.....some days more than others.....on behalf of those who may not speak up and may be worrying..... Some days that's me!

I'm glad you are doing well.

J.
 
Kev,
I also want to thank you for your presence here. Adding your success story helped me make the decision to fight to put my daughter on LDN. I also feel like you do angry at the doctors for pushing these drugs that can have terrible side effects and not being willing to look into a safer option because there is not a lot of money to make off of it. I find it so frustrating and want everyone to know there is another option out there to look at and try before trying these other drugs that can have such bad side effects. Sometimes I wish I could shake these doctors when I hear about them denying LDN with out even giving it a try.
 
Kev and azmom...I just now noted that kevs recent post was a response note...I was wondering what prompted that! I'm glad people here can express themselves so even keeled and continue this dialogue..that said i completely understand why someone might have a reaction to the term Russian roulette....although it went right over my head and didn't offend me.....mostly because while I am thrilled 6 mp seems to be working...I hate it and I do feel like I'm playing that game ...because lets face it. We kind of are. The outcomes are optimistic but unknown and a gamble of sorts.
It's funny because I was basically thrown out of an LDN facebook group after I suggested a member not use the term "hellmira" to describe humira. She used it constantly and although I was not offended since we've never used humira .....I suggested that her constant use off hellmira might offend people who have had success using it.
Man, did I take a beating for that one! From that day on she posts using the term Humira in quotes and never without mentioning "I wouldn't want to offend anyone" when she speaks of the negative effects she suffered!
This thread reminded me of that! Too funny!
I appreciate the knowledge you both bring to the table......let's help everyone find their best path!
 
I personally believe what makes this such a warm and welcoming forum, as a whole, is the acommodating of many and varied experiences and opinions. Provided robust discussion is respectful then no one should be made to feel their views are any less valid than anyone else's.

As a parent I fully understand how sensitive and inadequate it makes one feel when you spend your life making the most difficult and heartbreaking decisons everyday of your life for someone you hold more precious than life itself.

As a parent of two children solidly in remission I also understand the overwhelming desire to pass on what is working for them in the never ending hope that others it may work for others too.

We all come here with our journey's, detours, and bumps in the road and no two are the same. We read of others successes and we rejoice in them, we read others failures and our hearts go out them. One person may have had wonderful success with a drug or diet that failed my children miserably and I am so very happy for them, on the other hand I know my children have had success where others have failed and that makes me so very sad. My story is not your story and unfortunately that is Crohn's...no rhyme, no reason.

I want to read about everything I can about this bloody disease...articles, research, opinions, experiences...and that is why I come here, it is my one stop Crohn's shop. At the end of the day it would be a pretty damned boring place if we all thought, felt and said the same thing. So here's to the respect we all have for each other that is okay to have travelled a different path and in doing so bring those differing views and opinions to us.

Onwards and Upwards,
Dusty. xxx
 
David said:
The ironic thing to me is not a single study has shown statistical significance that mesalamine (think Lialda, Pentasa, Asacol, etc) is efficacious for Crohn's disease in any meaningful way and a Cochrane review absolutely destroyed it as a treatment option.
Click to expand...

David how would I find this information about pentasa?
 
You know, I've been here for years, and still it amazes me that I can compose a reply, and it reads perfectly fine in my head; and conveys exactly what I intended without the most remote possibility of being mis-interpreted.... then I re-read it, and realize that it can (and sometimes is) taken in a totally different way. So, let me try again (and, a caution. I can be extremely long winded and obtuse all the while without realizing it one iota)....

First off, some important items NEED to be clarified. I was trying to explain how I can be sufficiently dense enough to insert my foot in my mouth... to the point, I had no intent in using the Russian Roulette term to denigrate anyones choice of medications. I've said this before, in other posts... but it needs re-stating/re-freshing. If you are on a drug, a diet, a regimen, whatever.. that is stopping your disease in its tracks, stick with it. For the love of whatever you hold holy, don't rock the boat. If it ain't broke, don't fix it. Can I use any more cliches? Yes, I personally believe that LDN is a safe choice, but it isn't the only choice. There are risks. Here is the biggest one to always remember. LDN is NOT 100% successful. If you've got something that is working, whatever it is, then I say kudos... congrats. Don't jump ship because there are some folks for whom LDN just doesn't work. Crohns is a vicious disease, it is very unforgiving of mistakes.

Now, back to my main faux pas. Russian Roulette. My previous post was a misfired attempt to put my mindset behind using that term so causually (without pre-thinking) into perspective. Allow me to take another crack at it. Anyone recall life pre-Crohns???
I do. Anyone recall the story "Alice in Wonderland"? How bizarre Alices experiences were on the other side of the looking glass? Well, I can relate. I call it Kev in Crohnie Land. I remember laying on the operating table, while the anestesiologist I'd just met was going over my options. Bear with me folks, OK? First was general... then he trotted out the disclaimers.. the warnings... the last one (I dunno why they always save the best for last) being that I would go to sleep and just never wake up. Wait a minute! Back the truck up!! You see, I'd never anticipated having a serious conversation about going to sleep and never waking up pre-Crohns. Then he went into epidural... and he called it the cadilac of options... Where are the Volvos? They're safer. But I digress. And his caveat about the epidural option was that... and he gave me the exact odds/chances.. which I can't recall... was that I might end up paralyzed from the injection site down... forever... Ok, now choose!
If anyone thinks I'm making up this surreal episode of Kev in Crohnie Land, I swear to you I'm not. That is one of the aspects of this disease. Life becomes very surreal. I did make a choice. Opted for the general. Why? I decided I'd rather be dead than paralyzed with Crohns... just couldn't picture dealing with having to rely on someone else whenever I had to go, and go, and go. You know what I mean? Now, there, I probably have unintentionally insulted the paraplegic crohnies out there. No insult intended, just knew I personally couldn't cope. Anyway, pressing on. Over the years, and the drugs I've had to take... you get to a point where you become ... desensitized (sp?) to ALL the warnings, caveats, disclaimers. To the point where they begin to slip under the radar. But, then again, we are in Crohnie Land. We all are. And the choices available to us leave a lot to be desired. And the associated risks are often downplayed. To the Nth degree. Like, 1 chance in 10,000.. or 1 in 100,000... or even 250,000. But look at how many of us there are. Then take a hard long look at what those odds are relating to.
No, I was wrong (thoughtless) to use the phrase Russian Roulette. And I apologize. Now let me use a different phrase. And I think this one is appropriate, considering everything.
Let us call it a crap shoot. OK? OK
 
No skipping out allowed!!!!!!!!

And yes, crap shoot is PERFECT. For those of you with as many or more sensitivities than I have, stop reading....I'm getting ready to swear. :shifty-t:

I was in a meeting yesterday (and yes, I'm in healthcare) where someone kept saying a "crap-ton" of this and then a "crap-ton" of that. I finally couldn't resist and asked, "Is that more than a ****-load?" His answer? "A crap-ton is half of a ****-load and not nearly as much as a metric crap-ton."

I think I was more comfortable with all the poop euphanisms than anyone else at the table. See there's another positive to being a Chronie or parenting one - we no longer get embarrased! :ybiggrin:

We love you, Kev. Stay stay stay to shoot the.......crap.

J.
 
Oh, I'm not leaving... at least, not without a fight. As for shooting the ... crap, you need to be advised that I have a couple of unfair advantages over the rest of you. Long before my sons came along, I was VERY into shooting... some rifle, but mostly pistol. Hours spent practicising standard silhouette, combat or advanced combat shooting. I personally found it very relaxing, and ego boosting. Even went up against an Olympic level opponent once. And regularly against local and provincial police members. Got my name and picture in the local papers once for a perfect score at an outdoor range at 100 yards (yeah, back then we still used yards) with a pistol. Now that my sons are all grown up and gone, I even toyed with the idea of getting back into the sport (at my age) but then reality raises its ugly head... it is a very expensive sport/hobby, AND, I've discovered significant permanent hearing loss mid vocal range from the hours spent in indoor ranges, even tho I always wore ear protection. So, that is one distinct/unfair advantage I have....

The other? I'm full of ****, so there'd be an unlimited supply of ammo.
 
Thank you very much for this very interesting discussion!

I have a 5 year old son with very severe Crohn's and his doctor just made the
decision that we will stop with Remicade (because it is not working) and as a
next step they would propose Humira. We, as parents, would be very interested to test LDN instead of immunosuppressors. The problem is that he is (again) hospitalised due to stomach pain, bleeding, some sort of virus infection, etc. He is very fragile child.

Have you ever heard of patients as young as he taking LDN? How about the dosis (should it be less than 4.5 mg because his weight is only 15 kg)? In which form should it be (capsule, liquid, transdermal)? Furthermore, he is on Imuran (azathioprine) and we are very unsure, how we should deal with that.

We have discussed LDN with his doctors but they say that they cannot prescribe it, but they would be willing to follow his condition. That is a good start, we think :)

Thanks a lot in advance for your help!
 
I know you can continue the aza while starting the LDN as it takes quite a while for the LDN to kick in (10-12 Weeks) we are on week 9 with my son (13) and took him off the aza just recently as we were worried about a flare while waiting for LDN. It seems to have worked at least so far. Can't tell you about dosage based on his size I know Jack is only 75 pounds and he takes 4.5 Mg every night. Hope you find what works for him soon
 
You shouldn't use a transdermal naltrexone formulation because the medication is supposed to have a brief action. In the published studies, the medication was a capsule.
I don't know if the medication has been used in young children.
 
Malgrave
Dose usually work according to weight. However in this case I would think it is different because the real dose for naltrexone when used for its orinigal intention is much higher. It is about 50mg. I would probably call penn state and try to talk with the people who did the study about the dosing. Dr. Smith never called me back but maybe her people would talk to you.
 
Tess- Thanks for asking.
My son's been on ldn for 12 days. He thinks he may be feeling better--
We're cautiously optimistic but need for time to tell. I think a 3 month trial is reasonable.
 

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