My 8 year old son has Crohn's

[concernedfather]

My 8 year old was just diagnosed last week with crohn's. Obviously I'm a bit devistated by this news. He doesn't have any of the severe symptoms such as diarrhea (just 1 or 2 loose stools per day) no pain or blood. His main symptom that led us to the pediatric GI was a weight loss of 7 lbs. in 3 months even though his appetite was just fine. I've been searching 4/5 hours per day on the internet for info on drugs and even the latest research on LDN. We have started taking 6MP which I know has been around for many years.

Our GI guy has never even heard of LDN so I'm hoping some of you can help me out here. Tell me if this plan makes sense: Take the 6MP for a while until he acheives remission and while in remission discontinue the 6MP and start taking LDN (if I can get a prescription). Anyone with any experience or suggestions? Please let me know what you think, if it's a dumb idea just let me know, but do let me know. I'm just extremely concerned and I'm looking at anything that could help him.
Thanks,
Berry

 

[Nancy Lee]

Hello Berry and welcome to the Crohn's Forum!
I am so sorry to hear that your son has been diagnosed with Crohn's.

We have a forum here for parents of children with Crohn's...
I'm sure you will be able to get some answers to your questions-

http://www.crohnsforum.com/forumdisplay.php?f=49

Once again welcome~Nancy

 

[DustyKat]

Hi Berry and :welcome:

I'm so sorry you had to find your way here but having said that it is a great place for support and info.

I see you have found the LDN forum, I know of one parent that has their child on LDN...cowgirlnz...not sure if there are others though. There are loads of parents here that have children on 6mp or Azathioprine, me included so plenty of advice and experience there as well. There is also a parents forum you may like to stop by as well...

http://www.crohnsforum.com/forumdisplay.php?f=49

We are all happy to help out if we can and I, for one, will gladly give my opinion too! :lol:. Seeking the best advice and outcomes for your child is being the possible advocate you can, so what ever ideas you put out there and toss around are never a dumb. We know how you feel Dad, you are not alone in this sea of uncertainty and concern.

Good luck and welcome aboard!

Dusty. xxx

 

[kateel]

I am so sorry to hear of your diagnosis. I, myself was just diagnosed this past week. I keep thinking "thank God it was me and not the kids". I can't imagine what you're going through. I wanted to offer my condolences.

 

[crazycanuck]

I'm terribly sorry to hear about your son. I can't be much help with LDN but looks like some good links have been provided for you up top. I can tell you I was on Imuran for a while that worked wonders for me as a 18 year old male and Imuran is in the same family of drugs as 6-mp so it may be worth a shot here.

If nothing else I have definately learned to keep my mind open to every possibility when it comes to Crohn's.

 

[Dexky]

Hi Dad, welcome! My son was on 6mp for over a year. It can take 3-6 months to reach effective levels so I'm not sure I'd want to take him off once remission is reached. If it's quick remission you're looking for, was prednisone discussed? I know(believe me) your fears about all these meds but the dangers of Crohns unchecked are far more daunting in my opinion! I wish you and your little man only the best!

 

[MumofOli]

Hi

Sorry to hear about your son, you have certainly come to the right place for some great advice. Hope it all works out for you all.

Best wishes

Treena x

 

[Karissa]

Berry,
I'm so sorry that your son was recently diagnosed at such a young age. I found out when I was eleven and it was extremely difficult for both me and my parents. You will make all of the difference in his medical journey because he will know that you will be there to support him throughout everything.

6MP has been my most constant form of medication, and it has really helped me. Everyone's cases are different, but my advice would be to avoid steroids for as long as you can. The side effects are not fun and they are only a temporary fix. Of course, there are severe times where steroids are needed and are helpful, but stick with 6MP as long as it helps. Also, make sure that his school/teachers/administrators are fully aware of the situation. It will probably really help him to feel comfortable to leave to go to the bathroom or nurse when needed, and he will be able to avoid uncomfortable questions if the adults around him are informed. When I was in middle school, I would keep snacks in the nurse's office. I couldn't eat a lot at once or very quickly, so school lunch times were never enough for me. It was really helpful for me to go to the nurse's office for twenty minutes or so to eat a granola bar and just sit and relax.

Good luck. You and your son can do this!