# Low Dose Naltrexone



## kimmidwife

I was wondering if any of the parents here have tried this treatment for their child and what the outcome was? I am also wondering why I never heard of this before? Why are doctors not keeping us up to date on all possible treatments available. Why do they push certain ones? I just don't get it. If it was me I would educate my patient on everything.


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## AZMOM

There are strong feelings on both sides of the LDN coin. Our doc has not seen the success others claim. The studies are limited, especially for peds patients (my understanding anyway). 

If you go this route, I hope you'll share. 

J.


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## LittleChloe

Our 15 year old daughter was just diagnosed in September of this year.  I was fortunate enough to find this forum while sitting in the hospital on my laptop.  I came across the information for LDN and my husband and I decided that we wanted to try that first.  No doctor recommended or even mentioned LDN.  They wanted us to get started right away on 6mp while tapering on prednisone.  They also kept bringing up reminicade.  We declined these drugs and began our own research on LDN.  To my surprise when I asked Chloe's GI if he would give her a script for it he RELUCTANTLY agreed.  He had heard of it but was not familiar with how it works or even how to write the RX.  I gave him the studies I had printed out and he wrote the RX out the way it was written in the studies and called it into the compounding pharmacy that I gave him.  I had prepared myself for a battle and nearly cried with joy when I realized we were getting our way.  When I went to pick it up at the pharmacy I asked the pharmacist why more doctors weren't giving this to their patients.  He basically said its about two things.  #1. Naltrexone is not approved by the FDA for crohns disease and some docs just aren't comfortable stepping outside those lines.  #2.  It may never be approved by the FDA for crohns because it just too cheap.  The patent is expired and it's a generic drug meaning any drug company that wants to can make it.  So why would a drug company want to spend millions of dollars on various drug trials to prove Naltrexone works for other diseases when they can't corner the market and make money.  There is no pharmaceutical rep coming into your doctors office with glossy posters and information on LDN.  Any information a doctor has on LDN comes from his own research or from his patients.  And there are certainly no tv or magazine ads encouraging people to "ask you doctor about LDN".  So a busy doctor will education himself on the current FDA approved, mainstream treatment because that's what makes sense for him.  Our pharmacist said he is getting more and more requests to compound it so he knows the word is getting out and people are asking for it and at least for now that's what it's going to take.  As for Chloe, she is doing really well.  After about one month on LDN she began having normal bowel movements for the first time in months.  She has more energy and has gained 9 pounds.  She had a follow up appointment last Friday and I'm still awaiting all the blood labs but her GI told us "something you are doing is working so keep doing it".  (I still don't think he wants to admit that LDN works) I've also paid attention to all the posts on here and we are taking vit d, vit b 12 shots, probiotics, colostrum, fish oil and digestive enzymes.  I wish you the best and hope you get what you want for your daughter!


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## samilou

X2 on what LittleChloe said! Just wish we would of found LDN earlier so Sami would'nt have had to taken all these other meds.with such serious side effects.


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## DustyKat

Hey Kim, 

Another 2 parent's with children on LDN that I can think of is:

DMS-
http://www.crohnsforum.com/member.php?u=45063

and cowgirlnz-
http://www.crohnsforum.com/member.php?u=78712

Good luck! 

Dusty. xxx


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## kimmidwife

LittleChloe,
What kind of digestive enzymes are you using?


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## LittleChloe

The brand name is Spectrazyme. It has protease 1,2 and 3 and something called amilase. I don't know exactly what all these do but the naturopath told us not to run out. Chloe doesn't like to eat if she doesn't have one to take with meals because she says her stomach feels alot better when she takes them.


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## kimmidwife

LittleChloe,
I am going to look into this more. I never heard of digestive enzymes for persons with Crohns I know people with cystic fibrosis take them.


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## dannysmom

Danny (undiagnosed) tried LDN (from a holistic MD) but it did not help him.


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## kimmidwife

Thanks all for the info. I sent Caitlyn's doctor an email with a link to the study at Penn. Hopefully he will review it before we see him on Monday.


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## mnsun

Hi there, the two main studies (I know of) documenting Crohn's improvement for  LDN are:

-American Journal of Gastroenterology, January 2007 issue: "Low-Dose Naltrexone Therapy Improves Active Crohn's Disease" by Jill Smith

-Digestive Diseases and Sciences Journal, 17 February 2011 (published online 08 March 2011): "Therapy with the Opioid Antagonist Naltrexone Promotes Mucosal Healing in Active Crohn's Disease: A Randomized Placebo-Controlled Trial" by Jill Smith

These, I believe, were done to satisfy the Phases I and II of the drug approval process.  There may be one currently in progress for children on LDN, not sure.  These were largely funded by Crohn's groups.  I think the remaining phases are kind of insignificant and deal more with safety, which was already approved when Naltrexone was accepted 30+ years ago at 10 times the LDN dosage, and marketing purposes.  When this is widely accepted, it will probably be another 3+ years in my layman's estimation.

I would print out both the above studies and explain the drug is a cheap generic for an off label use--cute pharma sales reps aren't going to be inundating his/her office with pretty graphs and selectively picked, company funded studies that minimize risks and exagerate benefits of LDN.  No matter how beneficial (though it is not a cure; I think it halts progression in 85% of users and 50%(roughly) of those actually show mucosal healing) LDN may be, there is no money to be made on behalf of drug companies.

I'm uninformed on the child dosage of LDN; doctors may have questions about this.  Even with adults, it sometimes takes toggling dosages according to metabolism. As with any pharma drug, I would take it with tons of water to offset whatever minute liver effects it MAY (though none have been implicated, I firmly distrust everything big pharma peddles) have by longterm usage.

I had to go behind my local doc's back to obtain a script; I'll tell him on next visit.  Good luck.


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## kimmidwife

We meet with the doctor this afternoon. I will let you know what he says!


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## Tesscorm

Hope all goes well!


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## DustyKat

Good luck Kim!...:goodluck:

Dusty. :heart:


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## izzi'smom

Good luck today


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## kimmidwife

Okay I am not a very happy camper right now. We waited half an hour in the waiting room and then they tell us the doctor is running at least 1 hour behind. We couldn't wait because we had to get my younger 2 from school. Meanwhile Caitlyn is complaining of bad pain again today! I am soo frustrated. I told the nurse just have him call me and we can discuss it over the phone. (Which is what
 I wanted to do in the first place but he insisted on seeing us in person).


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## izzi'smom

I am SO sorry...(((HUGS))) THat is THE most frustrating thing EVER!! Hope that he calls you, and quickly!!


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## Tesscorm

OMG, don't blame you at all for being upset!!!  That is so disappointing and frustrating!  I hope you hear back from him quickly too!


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## AZMOM

Love your heart......


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## DustyKat

Fair Dinkum Kim! That just sucks...boooooo! :voodoo:

I hope you don't have to wait too long for that call! 

Dusty. :heart:


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## kimmidwife

No call so far. I don't think he will call.


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## Johnnysmom

I am going to ask my G.I. about LDN as well.  Thank you for starting this, I hope we can all learn from each other.  Let us know when you get that call.  Hang in there!

((((Hugs))))))


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## Kelly2

Kim,
How frustrating!!!  Is there any way you could get hold of his email address?  I did this, and if I ever have a question, I just send him an email.  Of course, I only do this if it is very urgent.  I just wanted to let you know that in my past research, I corresponded with  Dr. Ian Zagon, who is a world renowed leader in LDN research.  I asked him if it could be used in conjuction with Remicade and how much a 12 year old would need, and this was his reply:

Sorry to hear about your child.
          Yes LDN and Remicade are fine. At age 12, use 1 mg of LDN every day. Buy it from Skip's Pharmacy in Boca Raton, FL - they are on the web.
           Good luck.
Dr. Zagon

We emailed back and forth, and he said for an older patient to start on 3mg. 

Just thought I would share this with you.  I hope you hear from the doctors office today!!

Kelly


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## kimmidwife

No phone call all day. Now it is after 5pm. I am sure he will not call today!


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## LittleChloe

This guy is making me mad for you!


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## DustyKat

Ah hell Kim.  I hope he picks up that phone soon...everything crossed for you hun! 

Dusty. xxx


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## kimmidwife

Arrrgh! No call still! We need a new doctor but have run out of options here there is no one else. We already left the other GI group due to a difference of opinion with that doctor.


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## Tesscorm

Won't help you much but at Stephen's next appointment I will also be asking about LDN...  I'll certainly post whatever I learn and if his doctor would even be open to the idea.

I'm sorry for how frustrating this must be for you! :ghug:


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## Tesscorm

Actually just one idea...   the LDN site (believe it's ldn.org???) provides a small list of compounding pharmacies.  I'd thought to myself that if I ever strongly wanted to start Stephen on this and his GI wouldn't prescribe it, I would contact the pharmacy and ask if they could provide me with a list of doctors who prescribe it.  Not sure if the pharmacy would be allowed to do this or not but it was just a thought I had...  Perhaps, going this route, you can find another GI, maybe a bit further but, perhaps still a manageable distance.


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## kimmidwife

Yay! he finally called and he said yes to the LDN. He is going to call the pharmacy at the hospital and have them prepare it for us. We are also going to increase her amitryptalline to 40mg to see if that helps with her pain and she is back on the entocort 3 pills per day for a few weeks. Yay Yay Yay!


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## izzi'smom

I remember reading that you should choose pharmacies carefully...not all of them compound correctly...let me see if I can find a link...


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## izzi'smom

From the LDN.org site:
IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form.

Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler will interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.
> IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers.

The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem. Please see our report, Reliability Problem With Compounding Pharmacies. Please see the above list of recommended pharmacies for some suggested sources.


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## kimmidwife

I asked him about that Angie,
He said the hospital pharmacy specialized in compounding meds for kids he is going to speak with them and hopefully they can do it.


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## LittleChloe

Good for you!


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## izzi'smom

Glad you already read it, Kim...sorry if I sounded know-it-all-ish...had two kiddos on my lap lol! Best of luck with LDN...it is on my list to discuss with my doc if Remi fails


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## DustyKat

I am so happy that the doc called and it is all ahead go! anda:anda:anda:

Good luck! I hope it works wonderfully well for Caitlyn, bless her...:goodluck:

Dusty. :heart:


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## Tesscorm

That's great news Kim!!  I hope Caitlyn can get going on the LDN very soon!


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## kimmidwife

Angie,
You did not sound at all like a know it all. I am grateful to you and everyone on this site for all the info everyone has given me!


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## kimmidwife

Great news pharmacist just called me he knows exactly the right way to compound the medication. I 
Over all the details with him. He will have it ready on Monday.


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## LittleChloe

Yeah!:ylol:


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## DustyKat

Oh wow Kim, that is wonderful news......I so hope it works for Caitlyn. Fingers, toes and everything else crossed!...:goodluck:

Dusty. :heart:


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## Dexky

Good news Kim!  I know we're all anxious to follow her progress.  Good luck!


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## DMS

Hi Kim, my son is now 18 and was on LDN for about a year and a half, I noticed that Dusty posted one of my threads re LDN, but I have posted an update (somewhere) about Mitch coming off of LDN and going on to azathioprine.  
LDN kept the disease almost at bay - CRP ran between 8 and 15, and the GI was okay with that, but he started having some problems, which in hindsight we now know were bacterial issues.  He was prescribed cipro which took care of those issues almost immediately, but the GI wanted him to try the aza before he hit 18 and was out of Children's.   At the time we didn't know that the LDN was doing such a good job (after going off of LDN his CRP shot up to the 40's).   On LDN his food choices were very limited, lots of reactions to different foods.  
It took azathioprine almost 6 months to become fully effective (by 4 months we knew things were going in the right direction).  He's now been on aza almost a year (it will be a year in April).  He's feeling great, handling university just fine, part time job, and is able to eat most foods, still gluten free though.   Crp is running under 3 consistently and has no side effects at all.

Good luck with the LDN, it wasn't our wonder drug, but it did a pretty good job, and I'm still glad we tried it.


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## Brian'sMom

DMS, when you say crp is running under 3, does that mean 3.0 or .03 or .3?  When my son's crp was 3.6 the doctors were very worried. His is now -.05 (I know its explained differently...like maybe our 3.6 is also 36?)

This isn't directed at anyone, I just had a totally independant thought about meds. It can be so daunting and overwhelming. I often think...are we doing the best one or not?! So here's my thought: I just wanted to add that getting things 'ok' might be good when they are adults. I think when they are; before/during/or just after puberty we need to strive for 'very good' instead of 'ok' crp and sed rate levels. (I understand that isn't always what happens, but pick the medicine that gets the upmost best results to keep their intestines in very healthy shape.) I have a friend that is so scared of biologics that she's letting her kid stay around the 30-50 SED mark rate. Her doctor thinks that, what he calls; 'a little inflammation', is ok.

I'll be interested in this LDN route and its results for Caitlyn. I don't know anything about it and am interested in learning. I'll be honest that it concerns me that you have to order LDN on the internet. And what are the claims of 'vivid dreams'? Does it affect the brain? (As you can see, I don't know anything about it!)


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## Tesscorm

Good luck Kim!  I'm so excited for Caitlyn!  I know it may take a bit of time but I hope she reacts positively as quickly as possible!

Kathy, can you tell me why you would be concerned about a sed rate of 30?  Stephen's last test showed a sed rate of 30.  We are going to see his GI in a couple of weeks but, I have been told the same as your friend by his GI's clinic (was actually his nurse) that a little bit of inflammation is okay.  I wasn't 100% happy with that but was okay to see how things progressed until Stephen's next apptmt.  My concern was that prolonged inflammation, even minor, would eventually cause damage.  Is that your concern as well or are you concerned about something a bit more specific?


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## DustyKat

Hey Kathy,

CRP is reported in either mg/dL or mg/L hence the difference reference ranges:

C-reactive protein (CRP) 0–1.0 milligrams per deciliter (mg/dL) or less than 10 mg/L (SI units)

Kathy and Tess, do you know why they are using ESR (SED) rather than CRP as the inflammatory indicator? ESR is an older test and doesn't respond to inflammatory changes as quickly as CRP. 

A little bit of inflammation is okay never sits well with me either. Chronic inflammation will invariably lead to changes in the bowel no matter how mild, and as you say Kathy, when you are dealing with children/adolescents that inflammation impacts on more than just their bowel. 
As you may know, Matt was diagnosed super fast with next to no symptoms. His inflammation was diagnosed, via scope and pathology, as mild to very mild. Things went downhill from there but even with the mild insidious disease that must have been present for quite some time I now realise, in hindsight, the effect was quite significant to his growth, energy and personality. 

Dusty. xxx


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## Brian'sMom

Tesscorm, my concern and our GI's concern was prolonged inflammation (even if mild). When Brian was diagnosed, his SED rate was 30 CRP was 1.9, then slowly climbed over 8 months. Our GI didn't like that one bit!! They want SED below 14 and CRP at .05. And fast!! 

Dusty, Our GI seems to look at CRP and SED equally. I agree with you that the CRP is more important and shows what is going on at that moment. Our GI wants SED rate and CRP to say the same thing: No inflammation at all.

PS, Brian's SED rate climbed to over 70, but in the beginning, when it was still only 30, his scopes showed he had moderate to severe damage inside. I remember being surprised.(Luckily only in 2 areas of his large intestine). When is SED was over 70, he also had a small fistula and abcess so that is probably what made the number so high. But I'm sure the abcess came from the months of prolonged inflammation while we juggled with azathiaprine and prednisone.

And his very small size is also what happened. He's got a lot of catching up to do.

PS. Not until we got started on Humira did his inflammation normalize. His SED rate is 12 and his CRP is -.05. (Note to Kim though, we never tried LDN, so I'm not weighing in on that by spouting these numbers. I'm only weighing in on the importance of getting inflammation normal)


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## kimmidwife

Kathy,
We are getting our LDN from the children's hospital. Our doctor told me most children's hospitals will compound meds. I too would be leery of buying a medication for my child off the internet unless I knew it was a reliable internet pharmacy. I actually take a medication that I buy from a canadian pharmacy that I found on the internet several years ago and I have not had any issues.


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## Brian'sMom

That's good to know Kim that there are some good internet pharmacies. (I'm a born skeptic and worrier!! Come from a long line of them!!)
 Please keep us posted on how Caitlyn responds to her new medication. Hope all the best for sure!! As Dusty says...everything crossed


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## kimmidwife

I sure will keep you all posted! I am nervous and excited about it. Meanwhile Caitlyn is feeling better back on the 3 entocorts a day and was in a good mood all day today. She is actually sleeping over at a friend's house tonight! Yay!


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## Tesscorm

That is great for Caitlyn - she must be feeling so much better to stay over at a friend's home!  Best feeling in the world when you see them enjoy themselves!

Thanks Kathy, Dusty - the continuous inflammation has been my worry too.  God, I wish I could just stick my head in the sand and pretend I didn't have to think about any of this!   Have been really feeling the weight of the concern this week and my daughter worrying me a bit too. Monday evening she said her pinky (joint) was hurting, woke up Tuesday at 6am because of the pain, I thought she might have sprained (or fractured) it at soccer on Sunday so asked my mom to take her to the local walk-in.  The doctor ordered x-rays and bloodwork, said she wanted to check for arthritis as well as injury. :confused2: As I wasn't there, I couldn't ask any questions and now all I can think is RA.  Stupid:ybatty:...  I know I'm blowing it totally out of proportion in my head and probably jumping way too quickly to conclusions, guess because I'm worried about Stephen's recent results.  Just feeling way down this week...:yfrown:  Just need to give myself a shake and get over the 'woe is me' feeling.  (Sorry Kim :blush: ...   didn't mean to sidetrack your thread!  Your LDN discussion is way more interesting and meaningful than my little breakdown here!:tongue: )

Dusty - I don't know that the GI looks 'to' the SED rate, I've only been given prior CRP results of Stephens, not SED rates; I was the one who requested the latest SED rate when I took him to the walk-in clinic. I know his GI tested his SED rate earlier but, that was when he was first diagnosed and, while I remember the words, they meant nothing to me at the time.


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## DustyKat

Doh! Sorry Kathy and Tess, I thought they were using ESR independently, not in conjunction with CRP. :redface: All makes sense now.  

Oh Tess, I know the feeling well hun...:hug:...but if you didn't feel this way then you wouldn't be the fab Mum that you are. It's these very worries and concerns that make us the best darn advocates for our kids that we can possibly be. I hope more than anything all turns out well for your daughter and it is just a common old sprained pinky. 

Dusty. :heart:


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## kimmidwife

Tess,
I totally know how you feel. Don't worry you are not sidetracking my thread. Try to keep your head up and remember we are all here for you.


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## Brian'sMom

Tess,
I also totally know how you are feeling!! Obviously from my post where I'm posting all Brian's numbers (That started a whole year ago) shows its on my mind ALL the time. I can't escape it either. I also blame every ache and pain on Brian's crohn's or his med, Humira. Last week he was complaining of being really sore in both his thighs...I immediately began my silent worry drill for a couple days.  Then one night Brian remembered that he'd been playing this game (every day after school) on Xbox Kinect, (Wipeout), where you have to do lots of activity involving squatting and jumping, etc. Duh...the sore thighs!!

We are here for each other for sure!!! Obtaining remission is great, but it doesn't make the worry go all the way gone  That's where we can help each other. 

I hope my questions and posts on this thread hasn't caused any of you to worry...its actually my own worries and kinda justifying my own path. And I never even knew about LDN so I'm just experiencing a bit of: Did I miss something I should've considered. 

Hugs


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## Tesscorm

Thanks everyone!  I appreciate the support :ghug:  And, Kathy, certainly wasn't anything you said...  my question re the sed rate was only because I wasn't sure if there was something I wasn't aware of re the SED rate.

When Stephen was diagnosed with crohns, it was paralyzing and knocked out my basic assumptions about life (the 'it can never happen to me...' and 'any problem can be solved!' beliefs).  But, the EN was a very acceptable treatment - no side effects, would give him the nutrients he was probably always short on being a picky eater, he took to the treatment very easily and responded well very quickly. :smile: It lulled me into a false sense of comfort.  I had my worries (as you have all heard!) but, deep down, I believed in the EN and that it would keep him healthy.  Getting the recent results and having the GI move up his appointment once I sent him the results almost felt like I was reliving the diagnosis.  All of a sudden, I was thinking meds - what to ask for, what would be recommended, what would be the side effects, how would it affect him, etc., etc.  You all know the worries.  Then, when my daughter mentioned the arthritis, immediately I looked up RA.  I can tie in lots of symptoms to RA - she sometimes complains of sore feet, sore knees, sore hip.  In the past, I always attributed it to her very physical lifestyle - soccer, horseback riding and tae kwon do (pretty much 7 days a week)!  All physically demanding activities that put a lot of strain on those joints.  But, now...  is it the activity or is it RA?  And, then, of course, I had to look up treatment...  well, there is no equivalent EN treatment.  We're right back to all the meds I'm afraid to deal with...  but now with both kids!

God, am I ever depressing!!??    I feel guilty being such a whiner, there are so many others here which so much more to deal with!!! :ybatty:

Am seeing my daughters GP on Tuesday, at least we'll know where we stand with that...  Then Stephen's apptmt is Jan. 25..., not too long to wait either...

I'm also dealing with Fibroids myself...  I'm low in iron, etc. - wonder if my 'down' feelings are also partly due to side effects from the fibroids???  Also seeing my specialist on the 25th...  maybe I'll have some answers for me too!

Thanks again everyone!!  It helps so much to let it out and have others really understand!:hug:


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## DustyKat

> God, am I ever depressing!!??   I feel guilty being such a whiner, there are so many others here which so much more to deal with!!!


No you're not! Just read some of my old posts if you want see depressing and pissed off! :lol: 

Let me tell you something Tess. When Sarah was diagnosed she had been undiagnosed for quite a while and was very ill. The reality hit hard and fast and in many ways it was a relief to have a name for her illness. I knew nothing about Crohn's and for a long time I lived in a honeymoon period, she was getting better and I could breath again. Then as time went on the true reality sunk in and at times I struggled with that, I still do to some degree. 
Then when Matt was diagnosed my world came crashing down and do you know what I did? I curled up in a ball and sobbed. 

:hang: Mum, you are doing a fabulous job and the emotions you have are normal, natural and just. :hug: 

Thinking of you, :heart: 
Dusty. xxxxxxxx


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## Dexky

Let us know how the appts. go Tess!  We all came to this site for the same reason, heartbreak for our own children.  There is certainly no shame in that!


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## Tesscorm

Thanks guys!  I don't often feel so overwhelmed...  guess just one too many things at the same time!  I'm feeling a bit more in control - really, thanks to you all - nothing has changed other than I don't feel like I'm dealing with it on my own! :ghug:

Hopefully, tomorrow's apptmt will be just a 'sprain' issue (and then I'll really feel silly for being such a wimp over nothing  ).

If that's not the news, then, getting back to the origins of this thread!!, I'll be taking a much closer look at LDN as it can also help RA.

I will be speaking to Stephen's GI about LDN - Sick Kids' hospital, here in Toronto, has a strong reputation in leadership, research, treatment, etc.  When Stephen was diagnosed, I was told they were one of the leaders in pursuing EN treatment (in Canada) and had quite a bit of experience and support for it.  I'm curious if they have any patients on LDN and their experiences with it.  I'll post their comments/thoughts on LDN...


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## kimmidwife

looking forward to hearing what you find out about LDN. We will be picking ours up this afternoon.


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## DustyKat

Good luck Tess and Kim!...:goodluck: 

Thinking of you both, :heart:
Dusty. xxx


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## LilyRose

Tesscorm, I just wanted to say you are doing a fabulous job. It is so hard to have a child with a long term illness, that is enough to try and deal with. So it is no wonder that something new happens that it would be hard to cope with. I hope that all is well for your daughter, let us know how it goes.

An kimmidwife, I have been following your thread about LDN, I hope it goves a great response and Caitlyn goes well on it.

It makes me wonder why patients have to push so much for treatments that are not the bog-stand ones, surely these specialists should be reading and researching on all available treatment options for our kids? Anyway, enough of that,

best wishes to you both,
LilyRose


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## kimmidwife

Hi All,
We got the LDN yesterday afternoon and guess what? It is in liquid form. Caitlyn freaked out saying use is not going to take it. After a long argument I got her to take it this morning and she almost vomited she said it tastes awful. I just spent 2 hrs calling different pharmacies to find someone who could make a capsule and do it correctly. Finally found someone and I called the insurance to make sure we can fill it again in such a short time they said yes just to have the pharmacy call them and tell them the situation and it should not be a problem, Whew if it is not one thing it is another. I just can't make that child happy lately. (You would think she would be happy it is not a shot!)


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## Tesscorm

Just seems NOTHING can ever run smoothly!!!   But glad you were able to get it resolved quickly!


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## DustyKat

ARRRRRRRGH! 

Thank goodness you were able to get things sorted!  

Lordy, after all you have been through I hope more than anything it does the trick...:goodluck:

Dusty. xxx


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## kimmidwife

Me too. I am really praying it will work!


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## LilyRose

Would you belive it! Well done and sorting it out!

Hopefully it does the trick now,
LilyRose


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## izzi'smom

Ugh...how frustrating! Glad the insurance company isn't giving you a runaround and ytou could get it settled quickly. Hoping ldn works wonders for caitlyn!!!


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## Dexky

I'm looking forward to hearing how this goes for her Kim.  Glad you got it sorted


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## Tesscorm

Caitlyn's got a whole fan club rooting for her!!!  I really hope it works for her!!!


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## Brian'sMom

Kim, I'm glad you were able to get it in a capsule! It'd be hard to drink something that tastes awful...and its not like she just has to do it for only a brief period like an antibiotic. 

Is LDN like azathioprine/6MP...the med has to get to a certain level in your body before it begins to be theraputic?


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## kimmidwife

The pharmacy called today and said they had an issue with the insurance. They got them to approve the medicine but they would not pay for the filler they use (lactose as Caitlyn does not have a problem with dairy) They said it is $8. I told them I am not going to argue over $8. I told them to go ahead and make them. Hopefully they will be ready by tomorrow. Meanwhile today she took the liquid again without an issue other then gagging on it. She had a little dizziness today which is a side effect but it was tolerable. She was in good spirits. Let's hope it continues!


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## LittleChloe

Chloe takes the liquid and says it is very bitter. The pharmacy gave us a dosing syringe so we fill it and she shoots it down the back of her throat. Then she immediately takes a big drink of ensure to wash it down. Just thought I'd suggest this in case you have to take it a few more days while they make the pills. Don't get discouraged by the side effects, they do go away. What dose is she starting at?


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## kimmidwife

They started her right at the 4.5mg


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## izzi'smom

I'm watching anxiously, hoping that it does the trick for Caitlyn!


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## kimmidwife

Caitlyn is feeling good so far! Still keeping our fingers and toes crossed.


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## Tesscorm

Good news!  Was going to ask this morning but thought it might be too early for her to have noticed anything!


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## Brian'sMom

How quickly will you be able to do labs?! I'm so excited for that  That's getting too far ahead!! I sooooo hope this is a great thing for caitlyn. It then opens up a big door for the rest of us too


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## kimmidwife

Briansmom
I am assuming we will do labs in month


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## kimmidwife

Hi All,
I have been off the site now for almost a week due to a death in the family. My MIL lost her battle with a brain tumor Friday night. It has been a very difficult time for our family. Anyway the good news is other than the first 2 days of her period Caitlyn is doing great. She is totally off the Entocort and on the LDN now for almost 6 weeks. She has been going to school and catching up with her work and feeling great! She lost almost all of the prednisone weight which she is really happy about. She has started participating in PE for the first time all year. I am continuing to keep my fingers crossed and pray!


----------



## Crohn's Mom

Hi Kim 

So great to hear that Caitlyn is feeling so good !  :dance::dance:
I hope it just continues to get better and better 

I'm terribly sorry to hear of your MIL's passing, that must be so hard. :hug:


----------



## Tesscorm

Kim,

I'm so sorry to hear about your MIL.  A very close friend died of a brain tumour just over a year ago; I know how very difficult it can be to see a loved one suffer in that way. 

But, am very happy to hear about Caitlyn!!!  After all her struggles, you must be ecstatic to see her so well!  I hope it keeps on going for a long, long time!


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## imaboveitall

I :heart: success!

I've been obsessing on here on and off all day in a fear state and just came across this...made me happy.

Good going, Kim, for looking into a lesser known treatment!
I'm going to ask about it at V's appt with the bigdog at Uni on Mar 14.

KEEP updating!


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## izzi'smom

So sorry to hear of your loss...but YAY for Caitlyn!!!


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## kimmidwife

Hi All Just got Caitlyn's labs back and all looks good! Her CRP is down and everything else is looking good!


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## Tesscorm

That's GREAT news!!!:dance::dance::dance:  After going through so much, you must both be ecstatic.  

Just out of curiosity, what does her GI say about the results?  I don't recall but was he/she encouraging, doubtful re the LDN?


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## kimmidwife

He fought us and did not want her to use it. After much arguing he finally relented. I have not spoken with him only his nurses. Her next appt is end of April.


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## kimmidwife

PS. We are sooo happy!!!!!


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## Dexky

That's great news Kim!!!


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## imaboveitall

AWESOME. :tongue: ( I just liked this smiley)
This is what we shall try after I d/c Humira, which I intend to do after the 3mo trial if not sooner.
I wish I'd gone with it first, actually.
WHY don't docs push it since it's relatively harmless...??


----------



## Tesscorm

I'm really so glad this is working for Caitlyn!  

I'll be curious to know what her GI thinks of the results.  Has she changed any of her meds since starting LDN?  When I brought up LDN with Stephen's GI, he didn't have faith in it and believes its 'success' stories are really caused by 'something else' and then attributed to LDN.


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## Johnnysmom

Could be happier!!!!!!!  So glad LDN is working . Thank you for keeping us all updated.


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## kimmidwife

Tess,
It is funny that you said "attribute it to something else" Nothing else was changed except she is off the entocort (type of steroid for those who don't know) I have been in touch with the Crohn's specialist we saw in New York to let him know about it and he is also saying oh it must be treating something else and not the crohns. What the heck is with these doctors? If it does not come from the big drug companies with millions of dollars behind it then they don't believe in it. It is like the EN American doctors don't want to believe in that either. Just ridiculous. Shouldn't our kids and their health come first? What in the world is the matter with modern medicine? It should be about making the patient healthy and that is it!!!!!!!!!! Sorry I am ranting.


----------



## Tesscorm

Agreed.  

The only explanation that makes sense to me is that a GI would be worried that by prescribing an unproven medication (not 'untested', but unproven for Crohns), they are leaving that patient untreated.

But, isn't that the case for all medications?  Stephen is being treated with EN - there was never a 100% guarantee that it would work, only that we'll try this FIRST because there are no side effects and then move to steroids if necessary, etc.  But, his doctors were risking that he would be 'untreated' while they waited for results.  Isn't that the same thing?  

I want to have faith in Stephen's doctors because I certainly do not have a medical background and his health is in their hands but, sometimes, there does seem reason to worry that the most unbiased medical advice is not always forthcoming


----------



## Kev

Well, another valid reason (tho it may be different elsewhere) is that here, specialists are fed by GP's.  In short, you cannot get an appointment to see a specialist in any field w/o prior meeting with your Family Physician and having him/her refer you.  So, specialists are subject to ... scrutiny..  possible 'shunning' by their local GP counterparts if word spreads they are dishing out experimental treatment to any patient that arrives on their doorstep.
See the Catch22? I'd think your run of the mill GI would pretty much have to rule out ALL other 'accepted' treatments first before putting a patient on LDN, or else run the real risk of having rank N file GP's afraid to refer patients to them.  There is a certain logic to it...  what if the experimental drug/treatment they offered was just snake oil?
It's just a shame in a situation like LDN; where it HAS the potential to do so much good while at the same time exposing one to such miniscule risk.  I think the only way to help in cases like this is to talk to your doctors... your family doctor, your GI, whoever, until they start to listen...  to investigate.. to educate themselves. It isn't going to happen any other way that I can see.  And those of us who are fortunate enough to get on it HAVE a responsibility to everyone else with this disease NOT to muck about and mess it up.  If LDN works for you, stick to the regime and behave yourself.  OK, down off pulpit.


OOOOPS.  Almost forgot what I started to say..  CONGRATULATIONS. YAY!!!


----------



## Jenn

My son's GI was willing to read the article about it, she hadn't heard of it at all and was surprised. She's not willing to put him on it until the pediatric study is done/published, which I totally understand. And maybe it's something we'll try when he's an adult. Still, it's important to be open to all possible avenues, right? We should all be bringing this up with the GIs, I'm really hopeful for this one because of the minimal risk!


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## Kev

I understand and appreciate her stance, but I wouldn't hold my breath waiting for a study on pediatric patients for LDN to be carried out in the near future. Naltrexone is off patent protection; there are generic versions of it on the market; and the manufacturer stands to gain absolutely nothing in funding such a study. Naltrexone is dirt cheap, and the generics even cheaper, and we are talking a very low dose. There is no profit for them to be had. 

That's the rub.  In a situation like this, there is no incentive for the private drug makers to test this drug on children, or adults, or anyone.  Only if and when some private group scrounges up the funds to test it will there be testing; and (from my understanding of it) EVEN with testing there can be no regulatory approval because only the drug maker can seek that.  And the real downside?  Those who are hit by this disease the youngest stand to lose the most. Why?  Simply because the longer they are on traditional meds the greater the chances of long term side effects associated with those standard meds. And the more damage the disease can inflict.  Personally, those are sound agruments to be made in favour of trialing a child on LDN sooner rather than later, but where do you find a doctor brave enough to agree.  I wonder what they'd do if it were their child. I know what I'd do if it were mine. Fortunately, mine are grown, and so far symptom free.


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## DustyKat

The problem with doctors, in general, is they don't like to be told and they don't like to admit they are wrong, well...:kissgrits: 

This is such a fab update Kim! I am soooooo happy for Caitlyn...

Dusty. xxx


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## kimmidwife

Kev said:


> I understand and appreciate her stance, but I wouldn't hold my breath waiting for a study on pediatric patients for LDN to be carried out in the near future. Naltrexone is off patent protection; there are generic versions of it on the market; and the manufacturer stands to gain absolutely nothing in funding such a study. Naltrexone is dirt cheap, and the generics even cheaper, and we are talking a very low dose. There is no profit for them to be had.
> 
> That's the rub.  In a situation like this, there is no incentive for the private drug makers to test this drug on children, or adults, or anyone.  Only if and when some private group scrounges up the funds to test it will there be testing; and (from my understanding of it) EVEN with testing there can be no regulatory approval because only the drug maker can seek that.  And the real downside?  Those who are hit by this disease the youngest stand to lose the most. Why?  Simply because the longer they are on traditional meds the greater the chances of long term side effects associated with those standard meds. And the more damage the disease can inflict.  Personally, those are sound agruments to be made in favour of trialing a child on LDN sooner rather than later, but where do you find a doctor brave enough to agree.  I wonder what they'd do if it were their child. I know what I'd do if it were mine. Fortunately, mine are grown, and so far symptom free.



Having been in the medical field for 18 years I have to say what Kev is saying here is 100% true. The studies will probably never be finished because there is no money behind them. I am kind of looking at Caitlyn as a study patient on her own. All I know is if when I have a choice of trying a drug with almost no side effects versus those other drugs I am going to try it first. I think Enteral Nutrion and LDN should be the first 2 treatments tried for everyone. There is a saying in medicine which is "First Do No Harm" I think to many doctors are swayed by drug companies and forget about this motto. If not I think EN would be offered to children in the USA prior to prednisone and all these other drugs. I know if it had been offered to us first I would have said yes with out even a second thought!


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## Jenn

It is disheartening to realize that's so true about large drug companies. But organizations are still funding research. I found this page when I was doing some reading off the lowdosenaltrexone org web site. 

http://clinicaltrials.gov/ct2/show/NCT00715117


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## Kev

OK, I'll eat my words...  (luckily, thanks to LDN, I can eat just about anything).  Kudos on finding this, and bravo to Dr Jill Smith for this study... essentially a follow-up to her earlier study on adults.  Couple of things that jumped out at me from what I've read so far

"Subjects taking tacrolimus, cyclosporin, mycophenolate, or anti-TNF-α therapy must be discontinued 4 weeks prior to study initiation."

"Prednisone greater than 10 mg or > 0.2 mg/kg orally"

OK, reason I excerpted (is that a word?) those two lines is that many people considering LDN were wondering what drugs they could/couldn't take in conjunction with Naltrexone.
I don't know why these drugs had to be stopped 4 weeks before the trial, or at dosages lower than 10 mg....  the write up didn't say, and it may as innocuous as they didn't want these drugs playing a positive effect that would then be attributed to the LDN.  It was interesting to see that "ClinicalTrials.gov processed this record on March 07, 2012" would indicate this is hot off the press.  I wonder where/when the report will see the light of day.  And how someone (like a concerned parent) can get their hands on it.

One final thought.  God Bless Dr Jill Smith.  Something to think about the next time we're in the mood to tar N feather all doctors with the same brush.  We crohnies need to start collecting funds to erect a statue in her honour.


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## kimmidwife

"I don't know why these drugs had to be stopped 4 weeks before the trial, or at dosages lower than 10 mg.... the write up didn't say, and it may as innocuous as they didn't want these drugs playing a positive effect that would then be attributed to the LDN."

Kev,
You are right the most likely reason is they did not want these drugs to possibly interfere in their results.
I am soooo excited to read this as well. Now we just need to get a pediatric trial going so all the people on this forum could benefit. The truth is though many of the drugs used for crohns including cimzia and humira are not approved for children. Remicade was only very recently approved for pediatric use yet has been being used already in kids for years.


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## Kev

Hey, when I started LDN in 07, Humira had yet to be approved for treating adults here in NS.  Time flies.

Anyway, that is just my GUESS on those drugs.  And my personal take on it (whether you can/can/t combine LDN with other drugs) is this...  If you want to trial LDN, then trial LDN. Don't cloud the issue with other drugs.  If it works, you'll know it was the LDN.. if it don't, then try again WITH the other drugs.  I did the LDN solo (except for the 5-ASA). If I can do it, anybody can.


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## kimmidwife

Kev,
I was just saying I am pretty sure your guess is right. My daughter is also just on LDN and pentasa.


----------



## Kev

Hey Kimmidwife

I'm sorry. I should have articulated that last post better.  The reason that I pointed out it was my GUESS is that... many folks will see things in print (here, there, everywhere) AND consider it Gospel. (I used to make a point of teaching my students NOT to take anything ANYONE said as Gospel).  I'm a crohnie. I take LDN.  I'm not a doctor, medical researcher, authority or expert on anything.  Last thing I want is someone out there who reads these posts as saying/thinking  "well, I saw this guy on the website who said I couldn't take this drug with LDN".  You see where I'm coming from?  That's all I meant.
All the best...


----------



## kimmidwife

Sure Kev makes absolute sense!


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## LittleChloe

This has been an interesting post to follow.  I wanted to weigh in on a fear that I've developed and see what you all think.  Like many of you I believe to some extent anyway that drug companies, some doctors and the FDA all kind of hold hands and scratch each others backs.  Here's my concern:  My daughter is taking a super cheap drug that is so far working very well at treating her crohns.  It has no side effects that she has to take other drugs to combat.  Nobody is really making any significant money on her treatment except perhaps the pharmacist who painstakingly compounds it for her.  We (and our insurance company) do not have to pay thousands of dollars a year for remicade or humira.  Chloe is getting better, not worse, so if she continues in this way she will never need their expensive drugs.   Here's the thing: I worry that one day the drug companies that make these big profitable drugs will take notice of LDN.  They won't like that people aren't taking their expensive drugs but opting for the generic "unproven" cheap drug.  Can they pressure the FDA into making it unavailable when it bites too far into their profit?  Would they get the support of close minded docs who net tidy profits from remicade infusions?  Someone who knows please tell me I'm being paranoid.  I lay awake at night contemplating stockpiling LDN in the cabinet for the day when I can't get it anymore.  Seriously though what do you all think?


----------



## DustyKat

Are you guys following the Useful Links thread in the LDN Forum. There are some good links and discussion going on in there...

http://www.crohnsforum.com/showthread.php?p=419114&posted=1#post419114

Dusty.


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## Kev

LittleChloe, I don't think there is any way to stop the spread of LDN treatment by anyone barring someone, someday putting forth a study suggesting it does more harm than good. I don't think the manufacturer of Naltrexone (or anyone who offers a generic equivalent) would be on board with that, as .. well, if a 4.5 mg dose has potential side effects, then the much higher doses that the drug is typically perscribed at must have much worse side effects.  That is one of the beauties of this treatment.  Naltrexone has been around for decades. It was tested AND approved at dosages MUCH higher (I think in the original tests subjects were given 150mg). And even if the makers of Naltrexone were to go under, since it is off patent protection, there are generic versions out there.
No, I think LDN is here to stay (mind you, I'm not a seer, else I would have seen Crohns coming and avoided dairy and red meat).  And, I think courageous pioneers like Dr Jill Smith will keep fighting to spread the word AND usage of LDN until it becomes available worldwide.  I also believe that everyone who persuades their doctor to consider it also makes inroads into the future of this treatment, hopefully saving not only themselves but other patients down the road.  But, unfortunately, that methodology takes time. Here I am, 4 1/4 years later, and LDN remains a little known alternative treatment Vs perhaps (because of its relative safety, efficacy and financial costs) the first choice of treatment.  Imagine, a day will come when someone is presented with a diagnosis of Crohns for the very first time, is told there is no cure, but if you take this one pill each night at bedtime your symptoms will stop AND your side effects will likely be just vivid dreams... and it costs about $1 a day.  Sure would take some of the sting out of the Dx.

I guess (sort of on a bit of a down note) I'm a little perplexed that, although introduced to the world in the American Journal of Gastro-enterology in the early part of 2007, LDN hasn't made it's way to the forefront of research. I understand why the drug companies AREN'T involved.. there is no profit.. it already has been invented, patented, and gone off patent protection.  But why aren't those involved (like the Crohns/Colitis Foundation or other independant researchers) exploring AND pushing for testing and acreditation? (sp?)
When someone tells me that they are raising money to find a cure/treatment for Crohns, I wonder IF they really are; OR are they merely looking to fund the marketing of another NEW drug they can reap huge profits on AND patent protect until the cows come home. Don't get me wrong...  those researchers who are looking for the cause or cure for it NEED to continue their work; but something needs to be done by someone so that if you have this disease it is not a full scale battle to get prescribed an off the shelf, registered DIN, approved 4.5mg pill to make life with Crohns livable. OK, down of the pill.. eeer, soap box.


----------



## izzi'smom

Kev said:


> LittleChloe, I don't think there is any way to stop the spread of LDN treatment by anyone barring someone, someday putting forth a study suggesting it does more harm than good. I don't think the manufacturer of Naltrexone (or anyone who offers a generic equivalent) would be on board with that, as .. well, if a 4.5 mg dose has potential side effects, then the much higher doses that the drug is typically perscribed at must have much worse side effects.  That is one of the beauties of this treatment.  Naltrexone has been around for decades. It was tested AND approved at dosages MUCH higher (I think in the original tests subjects were given 150mg). And even if the makers of Naltrexone were to go under, since it is off patent protection, there are generic versions out there.
> No, I think LDN is here to stay (mind you, I'm not a seer, else I would have seen Crohns coming and avoided dairy and red meat).  And, I think courageous pioneers like Dr Jill Smith will keep fighting to spread the word AND usage of LDN until it becomes available worldwide.  I also believe that everyone who persuades their doctor to consider it also makes inroads into the future of this treatment, hopefully saving not only themselves but other patients down the road.  But, unfortunately, that methodology takes time. Here I am, 4 1/4 years later, and LDN remains a little known alternative treatment Vs perhaps (because of its relative safety, efficacy and financial costs) the first choice of treatment.  Imagine, a day will come when someone is presented with a diagnosis of Crohns for the very first time, is told there is no cure, but if you take this one pill each night at bedtime your symptoms will stop AND your side effects will likely be just vivid dreams... and it costs about $1 a day.  Sure would take some of the sting out of the Dx.
> 
> I guess (sort of on a bit of a down note) I'm a little perplexed that, although introduced to the world in the American Journal of Gastro-enterology in the early part of 2007, LDN hasn't made it's way to the forefront of research. I understand why the drug companies AREN'T involved.. there is no profit.. it already has been invented, patented, and gone off patent protection.  But why aren't those involved (like the Crohns/Colitis Foundation or other independant researchers) exploring AND pushing for testing and acreditation? (sp?)
> *When someone tells me that they are raising money to find a cure/treatment for Crohns, I wonder IF they really are; OR are they merely looking to fund the marketing of another NEW drug they can reap huge profits on AND patent protect until the cows come home.* Don't get me wrong...  those researchers who are looking for the cause or cure for it NEED to continue their work; but something needs to be done by someone so that if you have this disease it is not a full scale battle to get prescribed an off the shelf, registered DIN, approved 4.5mg pill to make life with Crohns livable. OK, down of the pill.. eeer, soap box.


This is what bothers me...while I would love for my dd and all other crohnies out there to have an effective treatment, I want even more for them to fund research to find out WHY people are getting ibd and the cause...prevention so that more people don't need to suffer. 

I recently had my doctor push another drug even though I specifically requested Humira (for psoriasis, not crohn's). When questioned, he admitted that the success rate was a full 20% less for my disease than Humira...it is CRAZY the hold that the drug companies have on these docs!!!


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## kimmidwife

Angie,
You are right. These drug companies really try to influence the way doctors practice even with the new laws that were put into place. Limiting the amounts of gifts they are allowed to give they still find ways to get around it. It is always about the bottom line: Money!!!!
I agree with you let them find a cure!!! but of course that does not make them any money.


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## AZMOM

I'm thrilled to hear Caitlin is doing well. 

There are certainly docs not open to patient/family ideas but the two we have had are not in that category. 

We have not tried LDN at this point but may get there. What I do not like from my admittedly superficial view is a drug people claim cures 100s of diseases. If it has that capacity, you better believe it would be studied and repackaged under another name and yes, someone would make$$. 

I hope Caitlin continues to improve and that a study proves all the skeptics wrong!   

Hugs,

J.


----------



## Catherine

Hi guys

Any one look up this group "LDN Research Trust" they look to a English group trying to get trails into LDN and crohn is listed.


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## imaboveitall

AZ, are folks saying that? That makes me wonder too...:shifty:
Are pts just FEELING better on naltrexone or actually GETTING better as in disease activity measured by biopsies/labs...(but who can go by labs as V's are not in line w/disease activity and so many on here aren't either...:ywow?


----------



## LittleChloe

If you can't use labs, colonoscopies, biopsies and feeling better as an indication of whether a medication is working then what can you use?  My daughter has gained back her weight, her bloodwork is very good, she has regular bm's, she feels good and is no longer exhausted all the time.  I guess she could have just gone into remission by herself because this disease does do that,  but then we would have to make that assumption about any drug.  How do you ever know if a drug has helped you or whether you just got better on your own?


----------



## Tesscorm

Certainly not an expert by any stretch but... I think the claims that LDN can treat so many illnesses relates to the fact that all the illnesses are auto-immune and that they all respond similarly to the LDN.


----------



## Johnnysmom

I love the fact that LDN has very few side effects and is considered a safe drug but I do think that the G.I.'s have a legitimate reason for not prescribing it if they haven't tried other drugs first.  It isn't proven and so they could be doing harm if they put someone on this drug and they get worse knowing there was a drug that was available to them that has proven success.  

I went to a meeting last night at my son's hospital because we are enrolled in "improve care now" with hospitals across the country.  They track the meds everyone is on and the success they are having and the G.I.'s get access to all that information.  People who have already tried other options or choose to use LDN first will be tracked and the success monitored.  I think getting word out on this forum is invaluable.  It offers options to people and will possibly provide the proof that it is a successful med that can truly be helpful.


----------



## Kev

Heres a take on it for those who get the feeling that LDN sounds too good to be true. That it must be placebo effect, or that it's all psychosomatic.  My GI wasn't keen on my going on LDN, but given I was going downhill with no end in sight, and really no traditional options left, she did her research, and reluctantly agreed. When I say that, I don't want to give the wrong impression.  She got her hands on the full study, not just a synopsis. She arranged a local pharmacy to compound it (all in all, just so surportive it still amazes me), she put me on it (on the QT/hush hush) and insisted I have regular scopes, blood work, and visits.  She watched me like a mother hen. And it worked. She saw the improvements, via scopes, via labs, via me. I was a walking skeleton before LDN (I have a driver's license photo from that time, I looked like I was dying. In short, I was)
Now, I've got scar tissue inside, but everything else looks healthy... my disease can only be detected at the microscopic level.  And I've posted the photos of my insides to demonstrate that (In my 3 year later thread).  And that living skeleton? He's gone, and I look like the guy in my avatar...  like he was my identical twin brother or something. So, if you think LDN is too good to be true, I know where you are coming from, but let me tell you...  you are wrong.  Let's hope you (or anyone else thinking along those lines) doesn't end up being dead wrong.  Or, to paraphrase a TV ad, (if you can get LDN) 'Why not take the LDN 14 week challenge?  True, it is a gamble, but if it pays off, WOW BABY!


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## imaboveitall

I'm all about trying it, I wish I had before starting the three mo Humira trial.

LittleChloe, No, I agree with you, that's how it went w/V with EN, she got much better and FAST. I've just learned on this forum that labs way more often than I formerly thought, do NOT correlate with severity of disease activity. That's the case with V and I since have read many on here who state this also. Also scopes cannot reach all areas of small bowel, V's scopes are NORMAL both grossly and histologically but she has disease visible only with cap endo.


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## AZMOM

I'm all about figuring out what works best.  I'm skeptical of "one size fits all" on anything.  If everyone was telling me Humira was the miracle drug, I'd still be wanting my doc on board because I need him if there's a crisis or if it doesn't work or if I have questions.

And, to be honest, I left another forum a couple of years ago after repeatedly getting beating about the head & shoulders :lol: about the Specific Carb Diet combined with LDN being the one and only for every patient.  That "crew" took it a step further that I had "caused" my child's Crohn's through what I had allowed her to eat.  The LDN curing too many things skepticism I have is admittedly a lot from those days.  

Okay, enough of ancient history.  :ybatty: Just thought a brief explanation of where I was coming from might help it make sense.  I'm not as naturally grumpy as I may seem.  

Three cheers for ANYONE feeling better around here.  

J.


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## imaboveitall

Hey maybe you'll get to police some poo like I did yesterday and that'll dispel any grumpiness... (why isn't there a poo smiley...) :stinks:


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## AZMOM

I got to police it right out of Claire's undies after she had an accident while doing her homework. She hasn't done that since the days leading up to her diagnosis. 

It's official. I'm grumpy. 

J.


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## Brian'sMom

AZMOM said:


> I'm all about figuring out what works best.  I'm skeptical of "one size fits all" on anything.  If everyone was telling me Humira was the miracle drug, I'd still be wanting my doc on board because I need him if there's a crisis or if it doesn't work or if I have questions.
> 
> And, to be honest, I left another forum a couple of years ago after repeatedly getting beating about the head & shoulders :lol: about the Specific Carb Diet combined with LDN being the one and only for every patient.  That "crew" took it a step further that I had "caused" my child's Crohn's through what I had allowed her to eat.  The LDN curing too many things skepticism I have is admittedly a lot from those days.
> 
> Okay, enough of ancient history.  :ybatty: Just thought a brief explanation of where I was coming from might help it make sense.  I'm not as naturally grumpy as I may seem.
> 
> Three cheers for ANYONE feeling better around here.
> 
> J.


TOTALLY agree!! I'd like to add that I'm skeptical of anyone spouting, "No side effects". Every drug has side effects!! Even simple aspirin. (Ladies; the ever popular birth control pill that's all over the news these days...breast cancer?) I also don't like conspiracy theories. They make me back away...doctors aren't evil greedy people who just want to make the pharmaceutical companies rich. At least ours isn't. Maybe if you're suspecting that...then you need a new GI. Look at the pioneers on here doing brave stem cell transplants...why not just give them LDN?
I agree with THREE CHEERS FOR ANYONE FEELING BETTER AROUND HERE!!  and love you all for researching and trying to help others...but let's not use scare tactics.


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## Tesscorm

Hey J,

Totally agree!  Glad you left that other site!  These decisions are difficult enough without having others beat you up over them or try to coerce you into doing something different!  Ughh!

Also with you re having your GI on board!  The LDN is very intriguing but I can't imagine doing it without Stephen's GI's support - even if it is reluctant support.  As you said, if there's a problem, I'd certainly want him to be watching for it or be aware of it.

I hope Claire begins to feel better! :ghug:


----------



## Brian'sMom

Maybe i'm reading into things...but is everyone on here that have approached their doctors about LDN...and they 'relunctantly' let you do it...saying the doctor is reluctant all because of the mighty $$? That's where I have the problem. I agree with Julie, if it was a cure all, doctors would be behind it. (Not sure if this is a fair comparison, but prednisone is REALLY cheap and it was our old GI's first defense. And is for a lot of patients on here). I'll just reiterate...I don't like when people go the road of conspiracy. Then we could be crazy enough to say, "Pharaceutical companies are putting stuff in the air and food that is causing crohn's so they can treat it and make billions.) Sorry I'm comming off so grouchy. This kind of talk just unnerves me and makes me question everything and anything I'm doing. My son is doing great...I should be celebrating instead of worrying.


----------



## Tesscorm

I'm sure there are some doctors who consider the $$ issue, however, I believe that these doctors would be the minority (maybe naive but I would hate to believe otherwise!).  But, I do believe there are other reasons why GIs would be reluctant to go with LDN:

- it may be out of their comfort zone - they're familiar with the steroids, 5-ASAs, immuno-suppressants, biologics, etc.  They can easily justify their prescriptions and they are 'routine'.  Going outside of this comfort zone would put the onus on them to research and make a definitive decision to NOT use what they know.
- they may truly not believe that there is enough evidence to back its alleged success.
- they may accept that there's a 'possibility' that it 'may' work and agree that the drug comes with low risk, however, the greater risk is that their patient, who requires treatment will not be receiving treatment while under their care while trying a drug that they only believe 'may' have 'possibilities'.
- also, as was mentioned somewhere, while the doctor may not be motivated by $$, he may be motivated by reputation - why risk their own reputation?

I think a patient like Stephen, who is doing okay with EN, inflammation there but 'manageable' may have an easier time getting a prescription because the downside is small (i.e. he can still continue with his doctors preferred treatment while beginning LDN).  However, from my perspective, I'm a bit afraid of changing what's working okay now...  My interest/hope is that, if I add LDN to the EN, knowing that the EN is not working 100%, can I avoid any deterioration in Stephen's condition.  Its something I want to discuss with his GI...  

But, in the case of a patient who is quite sick and deteriorating and hasn't yet tried all the traditional drugs...  I think this would be a harder sell for a GI.

A bit rambling but, hope it all made sense


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## imaboveitall

Well said, Tess, I think the main motivator for a doc will be REP which is predicated upon RESULTS and the fear of undertreating a sick pt who may worsen while on his watch and result in a LAWSUIT is the most common issue for a doc as regards this.
Docs don't want their pts to get worse, and I don't think money is in play very much here, I truly don't and I have worked with docs and have them as personal friends and the ones who are "in Big Pharma's pocket" are rare in MY experience.

V's doc has always stressed her "undertreatment " and made clear in writing via email (to cover himself and I don't blame him a bit for this) that he thinks she should be on drugs as well as EN (she is now of course) and that he fears disease progression and eventual sx but that he shall defer to our decision.
My guess is when I raise naltrexone after d/c'ng Humira this shall be his reaction as well.


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## Kev

I agree.  My experience with doctors has been extremely positive.  I honestly feel that, if it weren't for my GP AND GI going above and beyond for me (and, assuming that I'm NOT blessed by extra-special attention and they treat ALL their patients in similar fashion) I'd be in a VERY different place right now.  I recall the days when the only light at the end of the tunnel definitely felt like it was an on-coming train.  And I was tied to those tracks.
My doctors changed that outcome for me, and they certainly didn't profit from it financially.


----------



## kimmidwife

As someone who has worked in the medical field I did not see a lot of doctors being paid off in money for prescribing drugs. The things I did see were drug reps coming in and hawking their wares. Drug reps buying lunches, and sending doctors to conferences. Now last year several new laws were passed limiting what doctors can receive from drug companies but as with everything there is ways around it. Now I am not saying doctors are bad guys at all. But when someone who has been coming in to see you several times a week for a year (so now you are friendly) tells you about this great new medication his company has come out with and he would like to send you to cancun to a conference about it and you go to the conference and learn all about this medication and the research that has been done on it. Then you come back and start prescribing it and you see that it is working for some of your patients and now you are sold on this drug. So you see the doctors are not bad or evil.


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## Tesscorm

I can certainly see what you're saying, Kim, certainly what's been brought to their attention, especially repeatedly, by someone with whom they've built a relationship and with presentable results will influence a doctor, and not necessarily wrongly.  And, this all plays into my point that LDN is out of their comfort zone.  

It's not a matter of whether doctors are wrong or right for dismissing LDN, just unfortunate and frustrating.  In a perfect world, they would see their patients during the day and spend their evenings researching, studying and searching for the best drugs/treatments for their patients.  BUT, in our real world, to a degree, doctors do have to count on 'someone else' to introduce new, innovative drugs/treatments to them.  That 'someone' is probably most often a drug company representative.  (And somewhere along the way, $$ have got to be made or no one's going to do anything!)  The system is a good thing as it's brought Humira, Methotrexate, Remicade, and most other drugs to patients.   Not such a good system when it leaves drugs like LDN high and dry.

I think what's being done here is all that can be done and I think it's great.  The more people talk about LDN trials to their GIs, the more trials that are actually done, the more published reports, etc. will eventually push LDN into GI's comfort zones.  I would imagine the LDN would now be a treatment that Kev's GI is comfortable in considering and/or prescribing.  This is only because of the GI's exposure to it over the years.


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## imaboveitall

I swear, there are so many awesomely intelligent and astute folks on here...I love it. :soledance:


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## Tesscorm

:lol:  When our babies need us, it's amazing what we can learn and accomplish!


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## kimmidwife

Tess,
You are absolutely right! Especially if you think about the long hours doctors put in seeing patients in the clinic and the hospital and being on call etc. You always want to read up on the latest and you have this huge stack of professional journals sitting on your desk but somehow there are never enough hours in the day to get to it. (been there, done that!) Like you said the drug rep comes in buys you a nice lunch and for ten minutes tells you about his new great drug. There has to be money behind that in order to get it accomplished. It is frustrating when it comes to a drug like LDN where there is not so much money to be made because it has become generic. If this was a perfect world then money would not be a consideration!


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## Tesscorm

I read 'somewhere' about a company or organization that was doing research into these types of drugs (i.e. drugs off-patent which included LDN) and were possibly involved in trials, etc.  This just popped into my head so I'm really very vague on the details.  Do you remember reading about this on the forum at all?  It might have been a good contact re trials, etc.  I just don't remember at all where I saw this...  when I have a chance, I'll try to scroll through the LDN forum.  Does anyone else remember seeing comments re this company?


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## DustyKat

I dont recall anything Tess but that's not unusual! 

A tad off topic but the clinical trials websites listed here have some interesting reading in them...

http://www.crohnsforum.com/showthread.php?t=30394

Dusty. 

Addit: The only LDN trials I saw listed there, relating to Crohn's, were the ones conducted at Penn State.


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## Kev

I think 'we' can usurp some of the drug reps 'monopoly of influence'  on doctors if we go about it the right way. OK, what am I babbling about now?  Picture this, you've broached the subject of LDN with your doctor AND received the "now, now, lets leave treatment up to us professionals" reproach.  Or something along those lines. You hand him/her a printout of the synopsis of the Penn State study...  with JUST the bullet points highlighted. OK, so your oh so busy doctor hasn't the time to do all the research he/she NEEDS to do.  A one page synopsis is too much for the doc to find time for. But how about a couple of bright yellow highlited lines?  Might just capture some attention. And that may be enough to tip the scales.  If your doctor doesn't do the research then, well...  then I think you have a physician looking for the 'plausible deniability' excuse. I MAY be wrong in my outlook on it, but I don't think so.  After all, we are talking about clinical studies with extremely positive outcomes in the battle against Crohns published in respected medical journals.  A doctor turns a blind eye to that AFTER it has been brought to their attention, then it is probably a case of not having the cojones to take the heat for off patent/off label prescribing.  Which is neither un-ethical or illegal to boot.


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## Brian'sMom

A digress...a bit...what are the 'vivid dreams?' I myself, have a wierd one every now and then (and on no drugs), but usually can't remember them. Also...didn't I read somewhere LDN can cause insomnia? If so, that would be bad for a young kid...similar to steroids.


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## Tesscorm

Well, where there's a will, there's a way! :dance: Found the company!  Only took a few google searches!

Company is Transparency Life Sciences - http://www.transparencyls.com/

During my google travels, also found some other interesting links.  Some negative (although, to be honest, some were way above my head!  So I may certainly have totally misunderstood the main point of the article! :facepalm  But, might be interesting reading for some of you smarter people!  :study:

http://marginalrevolution.com/marginalrevolution/2011/03/makena-and-the-orphan-drug-act.html


http://www.sciencebasedmedicine.org/index.php/low-dose-naltrexone-bogus-or-cutting-edge-science/


http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1306

http://curetogether.com/blog/2010/09/13/new-study-low-dose-naltrexone/#comment-1958


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## DustyKat

Brian'sMom said:


> A digress...a bit...what are the 'vivid dreams?' I myself, have a wierd one every now and then (and on no drugs), but usually can't remember them. Also...didn't I read somewhere LDN can cause insomnia? If so, that would be bad for a young kid...similar to steroids.


My take on a vivid dream is one that is so clear and precise that it leaves you feeling that it was real. 

Dusty.


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## dannysmom

Vivid dreams can be disturbing. My older son hd this side effect from some medications he was on (at VERY small doses) and Danny had this from LDN.  Danny took his LDN right before bed as instructed 2 years ago. I was told that while LDN is in your system for only a couple of hours you could feel more tired so it was best to take at night. I have since read that LDN is now also given in the AM (like Caitlyn) and the vivid dream side effect would not happen.


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## Kev

My vivid dreams were extremely detailed, and all extremely pleasant, and sadly, all too brief. (I don't know if I'm the norm, but they didn't last as long as I would have hoped). One was of a vacation...  I could feel the heat of the sun, I felt the condensation AND the etching in the glass I was drinking from, and I felt the breeze against my skin. In a dream.
Yeah, they are so lifelike, so real, so rich in detail... that if they were 'frightening' dreams they could be VERY bad.  I never had anything like that.  All were wonderfully pleasant. It was like going on tropical vacation without having to get out of bed. Or go to the bathroom.  I looked forward to mine, but like I said, that side effect didn't last NEARLY long enough.  And, to throw in a reality check (since we are talking dreams) the side effect of this drug (LDN) is/are dreams.  Anyone compared that to the side effects of the other drugs? I'll take dreams (even the occasional bad one) any nite of the week.


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## kimmidwife

I agree kev. Caitlyn never had any weird dreams or insomnia. The only problem she has had is an occasional headache or some dizziness and both pass quickly. Like Kev said I would take those side effects over the possible side effects of these other drugs any day.


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## imaboveitall

Hey Kim and all, I emailed w/The Saint today re: starting V on naltrexone in June after her f/u.
He didn't say "no" or "yes" :stinks: ; he did say, he'd tried it with pts and also other stuff (listed thalidomide, GCSF, two other things I've never heard of) and hadn't been able to achieve the results the researchers had.
So I guess that means "maybe"?
Her LF has jumped back up to over 300 so she's going to do a six-day pred course (her first) starting tomorrow.


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## Mom2oneboy

imaboveitall said:


> Hey Kim and all, I emailed w/The Saint today re: starting V on naltrexone in June after her f/u.
> He didn't say "no" or "yes" :stinks: ; he did say, he'd tried it with pts and also other stuff (listed thalidomide, GCSF, two other things I've never heard of) and hadn't been able to achieve the results the researchers had.
> So I guess that means "maybe"?
> Her LF has jumped back up to over 300 so she's going to do a six-day pred course (her first) starting tomorrow.


Julie, what is LF?


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## Tesscorm

LF is Lectoferrin test.  It is a test that "detects the presence of white blood cells in the stool, a finding that is consistent with inflammatory diarrhea."  (source:  http://www.nphl.org/documents/LactoferrinStoolWBCTestHinrichs-Armbrust.pdf)

Julie's/Violet's GI uses this regularly to test Violet's level of inflammation.  I 'believe' it can provide similar indications re GI inflammation as the calprotectin test.  Julie will be able to give you a more knowledgeable explanation.


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## Tesscorm

Julie, I'm sorry to hear that Violet's LF test came back with elevated results :yfrown: :ymad:

I hope the pred can very quickly get it under control!! :ghug:


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## imaboveitall

Shelley, V's doc adores this test and is doing it every two weeks now to assess Humira response.
It's taken from a stool sample, (hence my slotted spoon and thanks to YOU, now TONG use) and measures a protein released by leukocytes at the locus of inflammation. Unlike CRP or ESR, which mark for inflammation ANYwhere in the body, fecal LF is specific to gut inflammation and nowhere else. He says it is both sensitive and accurate.

Tess, it was my idea, she's never had pred and I want to see if it does anything at all as she still feels like crap and now LF is slowly climbing upward. My guess is the quad/double loading doses of Humira were enough to lower it but the maintenance doses aren't. I told The Saint this and he said we could bump the Humira dose to which I was like, "hahah, you're a funny man" and started on the naltrexone pitch. :thumright:


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## kimmidwife

What did he say when you approached him about the naltrexone?


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## Kev

I've never heard of GCSF (anyone care to enlighten me?) but I have heard of thalidomide. I am from an era where lots of folks heard of thalidomide. I didn't know it was available anywhere for anything anymore.  I thought after the thalidomide baby fiasco, it was put away permanently.  I've never heard (but what do I know) of anyone else ever mentioning it being considered for treating Crohns.  I 'AM' surprised that he has 'NEVER' achieved the same results with LDN as the researchers have.  He (or his patients) have the absolute worst luck with it ever recorded (statistically, his/their results should mimic the researchers +/-) OR something is inherrantly wrong. Like maybe compounded improperly, or the wrong type of Naltrexone (SR), or something. I mean, my doctor researched it, convinced a pharmacy to compound it, and that was all it took. My success wasn't a 1/million fluke, she has a handfull of other patients on it now who are doing great.  I dunno.  Something about the scenario he described just doesn't make sense.  (the probability of one doctor having all his patients who tried it fall into the % for whom LDN doesn't work is astronomical.)  Am I the only one who gets this feeling???


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## DustyKat

GCSF - granulocyte-colony stimulating factor. It stimulates the bone marrow to produce more white blood cells. 

Dusty.


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## imaboveitall

Kim, he didn't commit either way, just responded with saying he'd tried it and "couldn't achieve the same result as the study authors". So I guess that means he is willing to try it since he has before on others.

Kev, I don't know how may he's tried it on, maybe just a few? This isn't the most progressive/well educated region so my guess is the bulk of his pt population aren't the type to research and ask for it.


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## Kev

Yeah, there is that positive aspect to it that I totally overlooked.  Since he has tried LDN on other patient(s), he may (should be at least willing to discuss it) prescribe it for her. If he does, then check and re-check the source pharmacy. Once you are 100% convinced it is done right, then half your struggle is over.  All you'd need to do then is trial her on it for 12 weeks. I know that sounds like an eternity, and it felt like one for me when I went on it, but should it do the trick (and the odds/statistics are greatly in your favour on this), then happy days are here again.  Hmmm, did I sound like some sort of used car salesman in that? LDN isn't a miracle cure, but it can make living with this damned disease...  well, not just tolerable, or bearable, but honest to God fun again.  You know what I mean?  Like, I can take a pill at bedtime and literally forget I've got it. (Crohn's that is)


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## imaboveitall

I'm sure I can look this up, but in the interest of laziness, do you know the correct way they must compound? Is it not something the compounding pharmacist will be familiar with?


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## kimmidwife

My compounding pharmacist knew exactly how to do it. I forget but there is an ingredient they should not use in the capsule. Someone put it in this thread check page 1. My pharmacist does use the lactose filler but Thank G-d that has not been an issue for us. I think they mail things all over the country if you want their number. They do take insurance if your insurance will cover it. If not it is $1 per pill. Comes out to $30 per month approx which is really not that bad.


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## imaboveitall

Ok, cool. Maybe The Saint knows too as he's had others on it. I have phys pals back home in PB who would order it for me and there's a compounding pharmacy in Boca but I really don't want to give it without The Saint being on board. I can't imagine him refusing outright, prob will just try to talk us out of it.


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## izzi'smom

^^Julie one of the sites warns against using just any pharmacy...I would check the list of approved ones. If I remember right only a few have had their pills consistently appropriate dosages and without certain fillers. (The LDN.org website has the info)


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## imaboveitall

Angie, thanks, I checked and the one I'm thinking of in Boca is on the list, happily. But none that are local to me here in VA. So maybe if The Saint OK's it I'll get my friends back home to get it from there and mail it to me. I can't wait to see what he says, I was encouraged by him saying he's tried it along with other "alternative" stuff. :thumleft: I'd like to start her NOW, but I feel like if we give Humira the full three mo trial as we agreed, he'll be more likely to agree to try naltrexone when we declare Humira an official fail.

V feels no better/different on the pred so far, by the way. :mad2:


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## Tesscorm

So disappointed for you and Violet that the pred isn't showing much of an impact!:voodoo::voodoo::stinks:


A bit off topic but, can you tell me the difference between calprotectin and lectoferrin tests?  When we go to Stephen's next apptmt, Apr. 10, I'd like to speak to his GI about the LDN again and, as I'd like him to continue with the EN as well, perhaps these tests would be good indicators as to whether the LDN is having an effect on him???


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## Kev

When I started, the nearest pharmacy that the lowdosenaltrexone site listed in Canada was in Toronto. I was prepared to go that route, but there is the possibility of a missed shipment...  so I was really glad AND eternally grateful my doctor convinced a local pharma to compound it.  Any pharmacy equipped with a hood (Naltrexone is sold in bulk in powder form, and since it is a neurologic, it has to be done at a site with proper ventilation) SHOULD be able to compound it. Your typical drug store/pharmacy is rarely equipped like that.  But if they are, then there is no reason you can't source it locally.  Unless they don't put in the effort to find out how to compound it properly.  Halifax is a relatively small city in an relatively small province, but we now have 2 pharmacies that do compound it (LDN). Keep in mind that Crohns isn't the only disease this drug (in special compounds) is being used for.  Both pharmacies here were able to get all the info they needed to do it right.
If you go this route, there are pitfalls to avoid... like the pharmacy doesn't do their work in researching this and compounds Naltrexone SR instead of Naltrexone (SR won't work). A percentage of people are sensitive to the filler/binder used in compounding. Lactose is a common one... no problem if you aren't sensitive, big problem if you are. Some places will offer a choice of fillers.... avicel (sp?), acidophilus (even more sp???) AND a choice of the type of capsule... glycerin, cellulose, etc (I'm not a pharmacist, so anyone with more info feel free to jump in)..  I'm lactose sensitive, so I've always specified none in my pills, but I've never had issue with any of the other combos of fillers and capsules. But that is just my case.  (issues like that, any given patient being sensitive to common pill components/fillers/etc. CAN crop up at any pharmacy). So, if your child has displayed reaction or allergy type issues with other meds (even flares) then you might want to look into it AND your options.  Be a downright shame to get approval for LDN only to have issues (including flare like issues) stemming from something as innocent looking as the filler or capsule.  I believe (but don't hold me to it) there was a member who was very sensitive to acidolphilous.  Like I am to lactose.  You never know this till it happens.

Couple of other points... When I first researched LDN (at lowdosenaltrexone forum) they were advising folks that candida can hinder the effectiveness of LDN. And that looking in ones saliva for long strands was a good indicator IF one was plagued with overabundant candida...  (which may be alleviated by acidolphilous)..  Anyway, if going the LDN route, do the saliva check.  And, LDN is not approved for treating Crohns, there is no 4.5 mg pill available from the manufacturer, so there is no DIN associated with it.. which means I know of no insurance company/plan that will cover the cost of meds with no official DIN.


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## imaboveitall

Kev, thanks, so if she needs 4.5 what does one do for ins approval? It's cheap enough though so I can just pay if I have to. Please expound...?
As far as fillers, V eats any and everything and has zero allergies/sensitivities so as long as the filler doesn't screw up the naltrexone she'll be fine.


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## Brian'sMom

Kev, Do you do regular bloodwork tests? I'm sure you do...but everything is good? No inflammation...not even a little?


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## imaboveitall

Tess, I think calprotectin is similar, but The Saint has always used lactoferrin.
It's all he's using to assess the Humira response. He puts a crapload of faith in it. He always does a bunch of labs (6-8 vials of blood) at every f/u but in between he does LF a lot.
Thanks for stabbing for me :kiss:


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## Tesscorm

Thanks Julie, from what I read, it does seem that the two tests give similar indications...  wonder if one is more common in Canada???  I think I've read of other Canadian parents mentioning calprotectin???  Not a big deal, I'll just speak with Stephen's GI about it. 

Figured you were 'stabbing' at the thought of the pred not showing results quickly!:tongue:


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## LittleChloe

Our insurance covers ldn for Chloe. When our GI let us have it he warned that it may not be covered but I was grateful to find out they did. Maybe you could call them and ask or call the pharmacy you're going to use and ask them if it's usually covered. I would have paid for it out of pocket also but it is nice to have a little help.


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## imaboveitall

LittleC, heck yeah, I  hope they shall cover. But it's such a blessing that if we do have to pay it is cheap. Can you imagine if it was Humira cost? :eek2:

Tess, do ask, it's so easy to just send a specimen and get a result a few hours later that is accurate to what's going on in there. Plus the Poo Policing Pleasure is a Perk :smile:


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## Tesscorm

Better get out my slotted spoon!  AND flashlight! :lol:


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## Mom2oneboy

Anybody ever tried a collander on the potty?


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## imaboveitall

TONGS, dear, are the new slotted spoon per Shelley oo:


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## Tesscorm

:emot-cop:  oo: :stinks:   Enough said... :rof:


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## Kev

This is embarrassing to talk about, BUT... on the basis that it might help someone out who needs to collect stool samples over a protracted period, let me tell you a little (disgusting) story.

Pre-diagnosis, doctors... clutching at straws maybe.. or just being thorough.. wanted me to do a total stool collection for a week.  Essentially, I went to the lab, they gave me a large, white, plastic pail, with an air tight lid, and the instructions to put all of my... output???  .. into it.. for a week.  Problem was, no one was willing to discuss how I was supposed to 'complete' the task.  My solution?  I built myself an industrial sized 'potty' chair... with a difference.  First, I got an even larger plastic bucket, large enough to support my weight AND a toilet seat, I lined that with a disposable garbage bag AND a screen that I fashioned out of surplus window screen (I'd replaced the screen in the patio doors but, in true Scots-Canadian frugality, hadn't thrown out the original screen).
And, voila.  A potty for adults that allowed me to catch my output without ever having to touch it... with tongs, gloves, HAZ-MAT suit, etc..  The screen would catch solids, I could remove the screen and dump contents in the pail, and the liquids were easy to dispose of in toilet, and then toss the garbage bag liner.  Hose everything off, reassemble and ready for the next go..  (Ohhh, there's a piss poor choice of words). If it can be scaled up to fit a man my size, I'm sure it can be scaled down to fit children.


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## dannysmom

This is funny how the LDN conversation changed so much!  I was told (for Danny's 72 hour test) that liquid D would need to be collected too ... so collanders, screens and tongs would not help


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## imaboveitall

OK this is going to end up being re-named the Poo Fetishists Thread if we don't stop oo:

Back on track...I am excited about my new medication plan and that V's doc has exp with naltrexone. (yes I still love poo)
Kim, how is Caitlyn coming now after a while on it? What changes have you seen?


----------



## imaboveitall

OK from The Saint to add NALTREXONE if this pred course isn't enough!
30mg pred for two weeks, add naltrexone then wean pred.
Thank God...:dance:


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## LittleChloe

Yeah for you!  Fingers crossed that it works for you. Did I miss something- who is The Saint?


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## Tesscorm

Way to go!!!:thumright: :thumright:   But, I hope Violet doesn't have to wait two weeks to be feeling better!  Hope tomorrow is already a better day for her!  :rosette1:


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## imaboveitall

LittleC, The Saint is the GI. He truly is one, the more I read on these forums the more I realize that. :wink:
The Guru is the bigdog rheumatologist/immunologist she saw.


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## izzi'smom

Kim, how is Caitlyn??!

...and for the rest of you...what is wrong with a good old hat? I will never look at my kitchen utensils the same lol.


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## kimmidwife

Hi All,
Sorry I haven't been on as much lately. life has gotten busy. Fingers still crossed tight Caitlyn is doing well. In fact she is complaining of consiptation for the first time ever! She has had some occasional joint aches and occasional headaches but otherwise doing Great! On our way to Disney next week. To All Have a great Easter or Passover!


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## Kev

That's great news.  I'm assuming Disney World (Florida) Vs Disney Land (Ca), right? Went there years ago, had a great time there. And if you can squeeze in Universal or Canaveral, all the better. Just be sure to pack a spare pair of legs... I used to hike 10 - 20k per day and despite that, my legs were shot at the end of each day. Absolute best time ever!!!


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## kimmidwife

Kev,
Disney World Florida you were right. We are also going to go to the new Legoland they opened. We have been to the one in California when the kids were little so we are really looking forward to seeing this new park.


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## Kev

I've got photos of me and my youngest in Disneys African Safari...  sitting in the last seat with a rhino basically standing beside the door within petting distance. He/she (how one tells the difference between a male/female rhino is only important to another rhino) just meandered over, the driver stopped the truck, the rhino slowly checked us all out up close and personal, then just casually meandered on his/her way.  We just pretty close to some giraffes, but they were skittish, and when we got too close for comfort, gamboled off.

I do so hope the LDN is kicking in.  If, as I suspect, it is, then you are going to be really amazed at how much better Caitlyn is going to feel/act.  Just be sure you've got your supply and a backup stash with you. Something seems to always go missing while travelling, esp. with children.


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## Tesscorm

Have a great time in Disney!!:grr1d: :jokercolor: :grr1d:


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## kimmidwife

Hi all we are here at Disney animal kingdom having a great time. I definitely recommend getting the guest assistance card.


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## Mom2oneboy

I hope you all have an AWESOME time!!!

Shelley


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## Twiggy930

Excellent!  Did you go on the Yeti ride?  Took my daughter on it when she was 6, I was terrified and she was thrilled!


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## izzi'smom

I am *so* glad you are having a wonderful time...ENJOY!!!!


----------



## Dexky

Hope you're having a great time Kim!  Are you eating in all the different "countries"?


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## kimmidwife

No no Epcot for us my husband does not like Epcot. Today we went to the new legoland park. It was not bad. Nice for kids under twelve. They also had a guest assistance card which was very helpful. It was a bit of a drive from the Disney area almost an hour. Tomorrow we are going to Hollywood studios.


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## Brian'sMom

Kim, I'm so happy for you guys that Naltrexone is your success med! That's great. I wish I was in Florida!! I'll bet its so nice to get away.


----------



## Crohn's Mom

Kim, I'm so happy you're having a great time ! 
I just sent you a PM thinking you weren't here in Florida yet ~ How long are you all staying? '
We will be going to Epcot this weekend  My husband loves it ! LOL
I'm not the biggest fan tho...
Enjoy !


----------



## kimmidwife

Hi All,
I wanted to revive this thread for some of the newbies here. Several people have PM'ed me to ask about LDN. As many of you know our story already I will give a little summary here for the newbies:
Caitlyn has been a really rough case of Crohn's Disease. She was diagnosed 4 days prior to her 11th birthday. She was put on prednisone and Imuran. She almost immediately had a severe allergic reaction to the Imuran. She got a super high fever and broke out in blisters. We then tried remicade which helped somewhat but not great. She started methotrexate but she ended up with surgery a year later. The methotrexate worked decently for 2 years but towards the end of the second year stopped working. (that was this past August). The first half of this school year Caitlyn almost missed the whole year. We tried Enteral Nutrition but Caitlyn did not really cooperate. In December we decided to try remicade again but Caitlyn ended up having a severe allergic reaction to it. The doctor kept pushing us to try cimzia but I really did not want to. I have really been not happy about using any of these meds with their possible side effects and kept searching for something else. Then someone on this forum recommended LDN. We tried it starting in January. (After a great deal of arguing with our doctor). Thank G-d it has been our miracle. I have gotten my daughter back. She is happy, full of energy, back at school and even participating in PE with out any problems. Her labs have also been coming back normal. So if anyone wants to know what I think of LDN? I say definitely give it a try! I don't care if there are not a lot of studies on it because it is a generic medication so the drug companies don't want to fund studies. It is a drug that has been around a long time and has a good safety record. We are extremely happy with it!


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## Johnnysmom

Thanks for sharing your story.  I am so sorry your sweet girl had such a rough go of it earlier on.  I am so happy she is doing well now.  .  LDN sounds very promising.  Do you know if you are enrolled in Improve Care Now?  My son is and it's a nation wide program where they track treatment and outcomes.  It would be great for other G.I.'s to know how great this is has been for Caitlyn.


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## kimmidwife

She is not enrolled in it. I will look into enrolling her.


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## crohnsinct

Awesome news!  Thanks to you and your daughter for being so brave and blazing the trail for others.  Hopefully as more and more people get access to the treatment and good results become known more GI's will accept it.  

Wishing you continued success!


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## LittleChloe

I'm so happy for you!  It's a great feeling to have your girl back I'm sure.


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## Sascot

Wow that sounds fab.  So glad she is doing well- it must be nice.  My son isn't doing too great just now.
Just out of interest - do you know if LDN is any good for dealing with fistula's?  I would like to give it a try if the Aza doesn't work but no point if it won't deal with the fistula issues.


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## Tesscorm

Kim,

It's so great to hear that Caitlyn is doing so well!!!  I do remember all those weeks when you and Caitlyn struggled so much with her symptoms!  Am so glad things have turned around!!  I hope it continues for a long, long, long time! :thumleft::thumleft:

Just out of curiosity, what does her GI say about her improvement?


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## imaboveitall

Kim, thanks and so happy to hear it!
Yes, what does the doc say?
Naltrexone shall be V's next step if and when. I know she cannot stay on pred forever.


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## Dutch941

Thanks again Kim......LDN is our next stop took hope!


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## kimmidwife

Tess,
We have not seen her doctor in a while. We have an appt in June. I will keep everyone posted.


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## Livilou

Hi Kim, 

  I have been following your posts recently, and I am so happy that Caitlyn is doing so well 
  on the LDN. My daughter has been on transdermal LDN now for over 3 weeks and doing
  well. She is still on 6mg of Entocort, and we were advised to wean slowly while increasing
  LDN. Liv had some side-effects on day 2 and we cut the dose to 1.5mg and are now up  
  3mg. We will be weaning Entocort to 3mg in approx 2 more weeks if things remain the 
  same. It is so encouraging to hear positive outcomes!!! Keep us updated!       Kim


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## David

That's wonderful that Caitlyn is doing so well!  Yay!

Have they done fecal calprotectin, fecal lactoferrin, or a colonoscopy on her since she started on the LDN?  I ask because I'm curious if her [wiki]intestinal mucosa[/wiki] is completely healed as well.


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## kimmidwife

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.


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## David

If LDN helps the mucosal layer heal that would be amazing and so very exciting


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## kimmidwife

I know David. I am keeping my fingers crossed!


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## Dutch941

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?


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## LittleChloe

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.  jsmith@psu.edu.  Let us know if you hear from her.


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## crohnsinct

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.


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## Dutch941

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.


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## Tesscorm

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.


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## Tesscorm

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.


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## crohnsinct

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.


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## crohnsinct

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.


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## Kev

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!!!


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## kimmidwife

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.


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## crohnsinct

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!


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## Igor_Passau

10 weeks on naltrexone! Could not help me!


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## izzi'smom

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!


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## Tesscorm

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?


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## Jenn

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


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## Kev

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.


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## DustyKat

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


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## izzi'smom

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!


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## Jmrogers4

: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


----------



## DustyKat

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


----------



## LittleChloe

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!


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## Kev

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.


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## Jmrogers4

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.


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## kimmidwife

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!


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## crohnsinct

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!


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## Jmrogers4

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.


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## kimmidwife

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!


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## Kev

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?


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## Jmrogers4

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.


----------



## kimmidwife

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.


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## kimmidwife

oops that is supposed to read the capsule and the filler.


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## Kev

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.


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## kimmidwife

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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## crohnsinct

THAT IS SO FANTASTIC!!!!!:soledance: You must be walking on air!


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## LittleChloe

Yeah for Caitlin!  (and mom)


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## Tesscorm

Great, great news Kim!!!!   I really am so happy for Caitlyn (and you )!!


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## jmckinley

Great news Kim! I am so happy things are well! I plan to mention LDN next week and see what GI says.


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## Jmrogers4

That's fantastic Kim!  Please keep us posted on her progress.  I hope Jack does as well after he starts on it.
Jacqui


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## Kev

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...  ;-)


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## Sascot

That's fab news, glad she is doing so well.   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


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## kimmidwife

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.


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## Jmrogers4

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.


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## Alanschachter

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.


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## David

Alan, can you please educate us on curcumin and bcm95?  I'm not familiar with them and know you do your research.


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## Alanschachter

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.


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## David

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!


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## Alanschachter

Turmeric tastes great, but you would have to take a ton of it.  Genceutic naturals and Life Extension are 2 brands that seem to have the lowest prices. Here is a good article. http://www.lef.org/magazine/mag2007/oct2007_report_curcumin_01.htm


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## ctrl z

Do you follow the dose recommendation on the bottle? I'm currently taking Meriva Phytosome Curcumins. Is the BCM95 superior to this?


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## Alanschachter

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).


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## kimmidwife

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.


----------



## Alanschachter

let me know if I can help!


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## kimmidwife

Thanks! I definitely will.


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## QueenGothel

Just wanted to say I am lurking and glad she is doing well.


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## kimmidwife

Thanks Mary,
 I go to pick her up from camp on Monday. I can't wait to see her!


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## Brian'sMom

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!


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.


----------



## kimmidwife

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.


----------



## LittleChloe

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.


----------



## ctrl z

I'd like to add that the Penn State trial was for moderate to severe Crohn's


----------



## kimmidwife

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.


----------



## Sascot

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


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## Dutch941

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...


----------



## Dutch941

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.


----------



## Jmrogers4

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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## DustyKat

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.


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## Dutch941

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.


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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## Jmrogers4

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.


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## dannysmom

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....


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.


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## Kev

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.


----------



## kimmidwife

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.


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## Brian'sMom

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.


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.


----------



## Brian'sMom

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


----------



## AZMOM

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.


----------



## Tesscorm

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


----------



## xmdmom

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.


----------



## Tesscorm

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.


----------



## Farmwife

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?


----------



## Kev

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?


----------



## David

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.


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.


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


----------



## Dutch941

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.


----------



## David

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.


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## xmdmom

Farmwife,

I only gave the doctor the two articles.  Here's the full paper for 2007. 
http://crohnsend.com/documents/ldn_improves_crohns_2007.pdf

I also directed her to http://www.ldnscience.org


----------



## AZMOM

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.


----------



## kimmidwife

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.


----------



## Dutch941

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!


----------



## DustyKat

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


----------



## LittleChloe

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.


David how would I find this information about pentasa?


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## DustyKat

LittleChloe, you might like to start with having a look at this thread

Dusty.


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## Kev

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


----------



## Dutch941

Just don't be skipping out on us Kev!


----------



## AZMOM

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 shit-load?"  His answer?  "A crap-ton is half of a shit-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.


----------



## Kev

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 shit, so there'd be an unlimited supply of ammo.


----------



## Malgrave

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!


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## Jmrogers4

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


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## xmdmom

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.


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## Tesscorm

xmdmom - How is your son doing?  Has he started LDN yet?


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## kimmidwife

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.


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## xmdmom

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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## kimmidwife

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.


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## xmdmom

kimmidwife,
I'm curious if your daughter's blood tests (hgb, Crp) improved on Ldn.


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## Tesscorm

xmdmom - I'm so glad he's seeing some positive results  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!


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## Malgrave

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?


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## Tesscorm

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


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## kimmidwife

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.


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## Malgrave

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


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## Dutch941

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!


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## David

That's great Don   I'm happy for you!


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## xmdmom

This is probably the case report your doctor was referring to:
http://onlinelibrary.wiley.com/doi/10.1002/ibd.21185/abstract
click get pdf for full free article


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## Tenacity

I am trying to find all the published studies about LDN.  Here is one I found from 2007

http://crohnsend.com/documents/ldn_improves_crohns_2007.pdf

And another one from 2011 - is this the 2nd study?  Dutch941 - are you talking about this one?

http://www.posterwall.com/blog.php?b=2215


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## Tenacity

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!


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## xmdmom

Tenacity- Do you know where Dr. Smith is working now? I heard she left Hershey Medical Center.


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## Dutch941

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..


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## David

The second naltrexone study has great results.  40 participants and not only did 88% have symptom reduction but 78% had mucosal healing evident by colonoscopy.  I haven't seen mucosal healing rates that high with any other medication that is approved for Crohn's.  Holy crap am I going to be mentioning LDN a LOT more.


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## Dutch941

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.


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## David

Dutch, so Dr. Smith did three different studies on LDN?  Two are published and one is awaiting publication?


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## my little penguin

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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## Dutch941

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)...


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## Dutch941

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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## Kev

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.


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## my little penguin

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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## AZMOM

This is a good discussion. Just my two cents....or three. 

J.


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## Jmrogers4

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.


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## Igor_Passau

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


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## Jmrogers4

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


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## Dutch941

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...


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## kimmidwife

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.


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## LittleChloe

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!


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## kimmidwife

Julie,
Thanks so much it is so great to hear from someone who is going through the same thing!


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## mreyn

Has anyone used crohnsdad protocol and what were the results?


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## kimmidwife

What is crohnsdad's protocol?


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## LittleChloe

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.


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## xmdmom

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?


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## LittleChloe

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.


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## kimmidwife

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.


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## Livilou

@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


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## Sascot

Sorry to hear about the flare up.  Hope she recovers quickly!


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## Tesscorm

Hope Caitlyn is feeling better QUICKLY!!! :ghug:


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## LittleChloe

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.


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## Kev

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.


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## kimmidwife

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.


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## DustyKat

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


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## kimmidwife

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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## Tesscorm

Kim, thinking of you and I hope you and Caitlyn have started to see some improvement by tonight! :ghug:


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## Jmrogers4

Posted in the LDN treatment section but thought I would post here as well, hopefully this means phase III trials

http://pdf.reuters.com/pdfnews/pdfn...&u=urn:newsml:reuters.com:20130108:nPnNE38930


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## my little penguin

Thanks for posting


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## Dutch941

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!


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## Jmrogers4

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


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## Jmrogers4

It looks like Jill Smith has taken a new job
http://www.gastro.org/journals-publications/news/aga-member-appointed-to-niddk
and so you don't have to look it up like I did because I didn't know NIDDK is the National Institute of Diabetes, Digestive and Kidney Disease.


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## kimmidwife

Thanks for letting us know about this!


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## Brian'sMom

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?


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## kimmidwife

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.


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## Brian'sMom

Kim, no problem. I'll find it. I was not on here for awhile and got behind on everyone! Sleep good


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## AlliMc

Hi- does anyone have any advice on doctors in Ohio willing to prescribe LDN for my 11-yr old son?


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## kimmidwife

Google it and you may be able to come up with a list. Don't know any offhand sorry.


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## Sascot

Hope the entocort kicks in soon so she can feel better!


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## LittleChloe

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.


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## AlliMc

LittleChloe said:


> 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.


Thank you! :kiss:


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## kimmidwife

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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