New to this forum...LDN questions

[handem3]

Hello everyone,
My daughter was dx with lower GI Crohn's June 2010. She has been on imuran since then with the occasional flare tx with steroids. Her dr is constantly mentioning Remicade. She is in a bad flare right now and we are doing Prometheus test to find her imuran levels/toxicity. I remember reading about LDN when she was dx but nothing came of my discussions w/ my now ex-husb or her dr. Ex is now in med school and hinting at remicade also....anyone have any advice about ldn...I would greatly appreciate it...Thanks

 

[Malgrave]

I am in the same situation.

Please check this:
http://www.crohnsforum.com/showthread.php?t=30646&highlight=Low+dose

 

[Kev]

There is a ton of info on LDN under the Treatment section. I've been on it nearly 5 years.
But I'm an adult, and its one thing for me to jump into experimental treatment, a totally different story when one is considering this treatment for their child. I can honestly tell you that one of my prime motivating factors in trying LDN was that I hoped it would offer a safer treatment option in the event my children should develop this disease. I can try to Coles Notes/Cliff Notes (hope that translates OK everywhere) on LDN as an option. I think it is fair/accurate to say that the risk of LDN not working on Crohns is at about par with every other medication. The big bonus is that LDN offers neglible risk of side effects/long term effects. The reason? The low dose. Typically sleep disruptions or vivid dreams are reported, and they usually go away or can be managed by taking it at the appropriate time. (bedtime is usually recommended). Five years (nearly) under my belt and the only effects I ever had were the occasional vividly detailed dream. Oh, how I miss those.... it was like taking a vacation while you slept. There ARE other risks that have to be considered. First, finding a doctor open minded enough to prescribe it. Brave enough too. It isn't illegal, it has been clinically tested, it was written up in American Journal of Gastro-enterolgy. This isn't voodoo or snake oil. Just a new use of an old drug that has been around for decades. Then, once you have a prescription (if it hasn't cost you your doctor/patient relationship) you need to find a pharmacy that knows how to compound it. Then, once you have the pills in hand, then there is the commitment to trialing it.... because of the way it works, the rebound effect, you (the patient) MIGHT get worse before you get better. If one takes the 4.5 mg dosage of Naltrexone nightly for 10 - 12 weeks, then either your disease will be in check, or you'll know for certain you are in the minority of people for whom it doesn't work. Think that covers the basics.
It isn't a miracle cure... but it can stop the disease in its tracks and keep it from getting worse. It can't undo any of the damages the disease has done up to that point. Nothing can. If I've left out anything crucial, others can fill in the gaps. And if anyone thinks I've mis-stated the case for LDN, please feel free to jump in.

 

[David]

Welcome to the community

Everything I would have said had already been covered. Be sure to check out our LDN subforum as Kev mentioned. The people there are wonderful and know a ton.

All my best to you and your family!

 

[handem3]

Removed link until you have some more posts under your belt

I am in the same situation.



So sorry to hear about your son!!!
Have you read "Breaking the vicious cycle" or "Wheat Belly" both are fascinating and apparently a lot of people swear by them. I started my daughter on the SCD(simple carb diet/brkng vcs cycle) and then went into the Wheat belly diet, she was doing great! Then she went into a flare. I have no idea why. Was it stress related, I let her eat gum which can be coated in starch and xylitol is a nono, or we ran out of enzymes (my fault). I'm currently at a loss, but I do believe the nutrition factor is a huge deal. She takes all SCD (simple carb diet/breakng vics cycle diet) compliant daily otc rx, vit, probiotic, enzyme and fish oil. Although I have no idea how they compound her imuran.

I believe these really help her!

 

[Malgrave]

Thanks Handem3. Actually we are planning to leave out first the dairy, gluten and sugar of his diet and then move to SCD. Alongside we would be interested to test the LDN. It will be a bit difficult since his doctors don't believe in dietary treatments and they are not familiar with LDN.

But we are not yet ready to give up

 

[Malgrave]

BTW, how old is our doughter and does she have severe Crohn's?

 

[handem3]

BTW, how old is our doughter and does she have severe Crohn's?

She is 11 and fortunately it is not severe. She had textbook symptoms and was admitted to the hospital within 2 days of finally seeing a specialist. Had a colonoscopy and we had a dx. Her doc said the colonoscopy pics look borderline moderate to severe. He wanted to jump on it with Remicade immed but I didn't want that. Hers has mostly been controlled with Imuran and she is in her 4th round of steroids for flare in 2yrs. So I actually consider us lucky compared with a lot of people. I don't know what to think anymore...3 books I plan on reading are: "What's eating your child?"(Kelly Dorfman), "Listen to your gut" (Jini Patel Thompson). Also the GAPS diet, have you heard of it? I read on a blog "crohnsboyblogspot.com" a woman who basically healed herself of uc doing this.
I sent an email to her doc today asking his view on LDN, if he blows me off (not enough research...etc.) I'm going to start looking elsewhere. Every time we see him he pushes remicade and for her to gain more weight. Do you have trouble with your son keeping weight on? It seems the doc's focus on particular things and not the whole pic. I was told repeatedly her diet had nothing to do with it...ok, enough moaning and groaning...off to bed..let me know what you find out and what's working diet wise and rx wise...Good luck!
*11yo daughter dx Crohn's june 2010
*rx: imuran 50mg/day, SCD: vitamins, pro-enzyme, fish oil and probiotic

 

[Malgrave]

Thanks again Handem3 for the grat links! I will check them.
We have been reading a lot Crohnsdad.blog and we are so sorry that he passed away.
And yes, our son has severe difficulties to gain or even keep weight. Every time he gains a kilo he loses it in during the next bad period. As I have mentioned in my previous mails, Remicade was a failure for him. It did not help and his immunity decreased so badly that within the 7 months he got it, he was hospitalised 5 times for a week or so (2 adeno viruses and 1 pneumonia)...

Let's keep in touch!