Son with Crohn's

I just wanted to say hi and introduce myself. My son is a member here as well... I have been checking this forum for a long time and finally decided to become a member. I have found lots of helpful information here and am particularly interested in LDN. I know from reading that Kev is probably one of the best people to talk to about this as he has been on it a long time and has had great reults.
Anyway, just wanted to say hi and I'll be talking to you!

Well, hi to you too. So, is it just your son that has it, or have you joined because you do too? Just wanted to be clear.

As for LDN... Short N simple, it saved my life. I hope those Phase III FDA trials usher in an environment where obtaining a prescription for it isn't so challenging, and doctors lose their fear of prescribing it. And, it would be nice if it came off the shelf, and didn't have to be custom compounded. I don't know when that day will come. In the interim, I am sooooo thankful that I'm not one of those waiting for it to happen. The other meds that are pushed down peoples throats (literally) scare the living daylights out of me. I'm speaking from experience.. I've had short term issues with AZA, and long term issues due to steroids and 5-ASA. I firmly believe my life would be better today if I hadn't been given either of those 'standard' drugs. The risk of side effects is all too real. You really need to look at the warnings, then weigh your options, and try to make your best choice. Doctors follow a set standard of care regimen.. which may be best for them, and not so good for their patient. Anyway, all the best. Welcome to the Forum

Hi Kev, thanks for the welcome! I don't have Crohn's, my son Michael does, which is why i've been creeping this forum for a long time. He is 24 yrs old and was diagnosed at 12. It's been a bit of a rough road for him. He's already been on pretty much every drug available for crohn's. At the moment he is back on methotrexate, which worked okay for him when he was younger and seems to be doing okay now but I was interested in your experience with LDN as it seems to be a less scary treatment (in my opinion).
We live in St. John's, Newfoundland so nice to see another east coaster on here.
I went with Michael to his latest GI visit and I asked the doctor, just as a personal interest question for me, if he had treated anyone with LDN and he said no he hadn't and seemed at first a little unsure of what it was. He did write down the name and said he was going to do some research. At least he is open to it if down the road it is something Michael decides to do. I will probably be asking your advise and opinion if it comes to that!
Thanks for your response, it's great to hear you are having such great results!
Brenda

Hi and welcome.
I sorry to hear your dear son has this disease and since so young.
I'll second the LDN. My Grace (4yrs old ) is not responding to treatments and I know the day is coming when we'll have to go the maintenance route.
We have a great Parent's Forum where other Parents to children of ALL ages can come and get support and ideas from. Please join if you like.

HUGS

Hi Farmwife
Thanks for the welcome. Sorry to hear about your daughter as well. I would like to join the Parent's Forum but am unsure how to do that. Do I just post a comment?


mom to son (24) with Crohn's
Dx Jan. 2001
he is currently on methotrexate

Press HERE for the Parents Forum


You can post your own thread in the Parents forum and introduce yourself and your son and your more than welcome to reply to anyones thread.

I look forward to seeing you over there.