LDN not effective yet and more GI problems

[Blue Eyes]

Hi,

I am brand new to this forum.
My 16 year old son has Crohn's Disease for the last 7 years. He has been on the antibiotic minocycline but this alone is not working anymore. He has tried the LDN for the about two weeks. He started out at 4.5mg and this is causing diarrhea to increase at night. We reduced the dose to 1.5mg by advice of the pharmacist. This still caused increased diarrhea last night. Does LDN work by itself or does this need to supplement other medication? Also, does a gluten free diet need to be also introduced at the same time? Will the introduction of an antifungal be helpful prior to use of the LDN? I need to try to get him stable again and gaining weight since he is still maturing yet. Any suggestions will be greatly appreciated.

Thanks.

 

[DustyKat]

Hi Blue Eyes and :welcome:

I'm sorry I can't help with your questions but I would like to welcome you to the forum. This is a great place with loads of support and info and there are also many parents here. Would you like to post in the Your Story Forum, more people will likely see your questions there and you can also receive a proper welcome.

Take care,
Dusty

 

[Crohn's 35]

:welcome: blue eyes! Sorry your son has Crohns, that has to be hard on you too. I do not know hardly anything about LDN and there are a few who are on it or were on it. I do know it takes about 3months to kick in. Everyone is different but there is a guy who is an expert on it but havent seen him for quite sometime. Diahreah is common in this disease, he could get a script for Questran and or eat homemade applesauce is slows it down some. Sorry not much help. Hope your son gets relief soon.

 

[ssv]

Hi Blue Eyes,

Welcome to the forum.
I haven't had any experience with LDN either, but from what Ive read it can take months to work and can sometimes make things worse before it gets better. If you search the forum for LDN you should find some good information.
I believe getting nutrients is essential to help heal. I have found Ensure great for supplementing my diet. I think its been more benefitial than any of my meds so far. It has plenty of vitimans and calories and seems to be well absorbed. You can also get better prescription versions of liquid nutrition that are better again.
As Pen said, apple sauce is always good. I also blend bananas with a little water and find that helps too.

Best regards
Paul

 

[Blue Eyes]

Information LDN and supplements

Hi,

Thank you Dusty, Pen, and Paul for all of the information. Homemade applesauce does work well for Mitchell to eat in his diet. I know he needs a drink supplement to help him gain some weight. I hope each of you is doing well.

Take care,

Mary

 

[Crohn's 35]

Ensure is the best way to help him to gain weight safely... and thanks for the well wishes!

 

[tannersmom]

My son tried LDN and unfortunately for him it did not work. I really wish it would have since it has little to no side effects. Best of luck to your son and you.

 

[Blue Eyes]

Ldn

Hi Tannersmom,

I am sorry to hear that the LDN did not work for your son. I am also trying to find a new antibiotic that will help Mitchell reduce the inflammation and bring him back into remission. The minocycline worked in keeping him in remission for over a year. Someone suggested Flagyl and Amoxicillin will work. Have you ever tried this antibiotic combination? I have been receiving advice that Mitchell needs to eliminate the starches in his diet. This is very hard with a teenager who wants to eat whatever he wants. I know when he did eliminate the grains for a short time it did help the Crohn's. I have a book called "The Fungus Link" by Doug Kaufmann which says to eliminate the grains and sugar. You can use a sugar substitute such as Stevia. I hope you find help for your son.

Take care.

 

[cowgirlnz]

Hi. My five year old is currently on his third month of taking LDN. You'll see my updates in this thread. We also found that the higher dose made his diarrhea worse at night. Dropped back to 1mg (still ok for his weight), and that seems to have helped. However the results from LDN have been inconsistent. We've had a few good weeks, but it just doesn't hold. We use Flagyl sometimes to help bring a flare under control. He's also gluten free, and follows a low fermentation diet. Not sure to what degree it's helping. The diarrhea is still pretty bad, but he manages to go to school and the pain levels are low - I guess it could be worse without the special diet - we're too scared to take him off it and find out!
We're still not sure about LDN - but we've come this far so we're willing to give it a bit longer. We'd like it to work.
I guess you just have to give things a try. It seems to be different for everyone.
Good luck!

 

[DMS]

Hi Blue Eyes, my son has been on LDN for just over a year now, as well as the specific carb diet, so there are no starches / sugar or complex carbs in his diet. He went through one bad stretch with Ldn about 4 months after he started taking it, but in talking with the pharmacist I found out that it had been compounded with lactose as a filler, if you're son is having problems with it that would be the first thing I would check.
I have read on the LDN forum that it is best to do something to eliminate the yeast in the body to give the LDN the best chance possible to work, we did this before he started LDN.

 

[Blue Eyes]

Hi Cowgirlnz and DMS,

Thank you for the suggestions on diet and LDN. I will try to reduce the LDN dosage to see if this improves his condition. I will get his diet better to help the LDN work.


Blue Eyes