Starting LDN tonight

[Charleigh]

E has not been on any meds, except for two rounds of prednisone. He will take his first dose of LDN (4.5mg) tonight. I am a little nervous.

I know to take it before bed, that it might interfere with sleep at first, etc. Anything else I should know?

 

[nogutsnoglory]

In all my reading on it he may experience some insomnia or vivid dreams but otherwise it's pretty safe.

Good luck and keep us posted?

 

[Jmrogers4]

Jack did not have any vivid dreams or insomnia. I kept asking. He had an awful headache the first 2 days. The only other thing is lack of appetite. We know he was in remission but appetite just never really improved whether it was due to LDN or not? Other then that no side effects. It took a while to really work and it was a slow improvement but one day we realized we could not remember the last time he had a symptom.
I'm still hoping we can go back to it one day.

 

[Kev]

Keep at it... don't give up... if you get him to the point where he is symptom free AND stays that way... then there is no reason it shouldn't stay that way for years, and years, and years...

I still have to pinch myself at times... my nightmare ended in 2007.. and here it is 2014.

TIME FLIES WHEN YOU ARE HAVING FUN...

 

[Wendles]

My son is 12 years old and started LDN a month ago . He has had no side effects at all no vivid dreams no nothing. The only thing that is happening is that he is like a new kid ! I started him the day before we left hospital where we had been for 2 and a half weeks for a giant abscess in his abdomen. The abscess never went down in that whole time we were there we left the same way we went in! He had no energy before we started LDN and had lost approx 6 kilos ( he weighed 27kg ) that was a month ago. He is on een at the moment and has just put on 3 kilos in a month. He has never gained weight so rapidly ( he was on een before and gained a total of 2 kilos in the eight weeks ) the last week he put on 700 grams this is huge for him ! I'm still trying not to get too excited but he has so much energy looks great feels great sleeps well 1 bowel movement a day and NO PAIN !!!!! It is definitely worth a try I'm so happy at the moment and hope your son does as well as mine has so far. Best wishes to you both, Wendy

 

[Charleigh]

I seriously don't want to get my hopes up BUT he had a good night. He doesn't usually dream (or should I say, he doesn't remember any dreams) and he said he did have very detailed dreams but they didn't keep him awake, etc. He feels good today. Holding my breath!

 

[Farmwife]

I hope it works. Grace was on it but it wasn't enough to keep her in remission.
We are hoping in the future once remission (for along while) is achieved we can go back to LDN.

 

[MamaHenn]

I'll be watching this thread closely. Right now for our 10 year old son we're just on Entocort and seeing a nutritionist. He was diagnosed in mid-February and other than poor weight gain and anemia, has thankfully not had any of the other Crohn's symptoms (no D, no pain, no food issues, etc.). Our nutrionist has told us to cut out all dairy, corn, wheat, gluten, carageenan containing foods and has him on some vitamin supplements. He really talks a good talk and I'm hopeful that this can help my son but I feel like after perusing these boards I'm sometimes kidding myself. OUR choice right now is to avoid the heavy duty meds until we absolutely need them but I've become more interested in LDN as a first step if something is required. We go back in May to the GI doc for our follow up and I know she'll be pushing 6MP as she was the last time.

Anyway, all that to say, Charleigh and Wendles please continue to report back on your child's progress (and any others that have children only on LDN). Thanks for sharing.

 

[Wendles]

Hi mammahen, you should follow the low dose naltrexone support group there is lots of information on there. My son has been very sick since diagnoses last may we have struggled ever since. I'm not saying its the LDN helping him at the moment but I'm really hoping it is its the only new drug we have started lately I'm crossing everything. He has been on it for a month now at 3 mg and he is a different kid ! He rides his bike everyday runs everywhere and is now a typical 12 year old compared to a month ago he had no energy and struggled to get out of bed and straight after school he would be back in bed. I'm waiting to get his next blood test done I'm hoping it will show that his iron has gone up as he has been anaemic since we found out about the crohns. At the moment I'm trying not to get too excited but it's hard after what we have been through. I will keep updating as I used to follow other people to see how they were going too. Best wishes to you and your son, Wendy

 

[MamaHenn]

Charleigh, how is it going?