3rd loading dose done

My boy had his last loading dose last night. blood test is on Friday, and bone density and MRI next week. I guess we'll know then. hes up to 75 lbs. a gain of 11 lbs. since january 18. he says he has noticed an increase in stamina. that's cool.

hey bob, didn't you start a thread about not sure if starting rem was good idea.(side effects). I told you about my niece who was having D but no pain, she was 15 at the time. But her scope looked horrible, and gi started her aggressively on rem. Kids react better to rem with their disease than older young adults and adults in general. kids can find remission quickly with rem. depends on the disease mind you. The key with your son is how long will gi keep him on rem. and what maintenance drug. To my niece, I saw her when she was 19, year ago. she was feeling great, I didn't ask what med she was on, her and her dad came to where I was working (casino) so I didn't have time for elaborate discussion. But I'm glad for your son, and his mom and dad.

AG

artist guy- I did try to avoid Remi as long as possible, because of the side effects. if it can get him through puberty, that will be long enough. he will be able to make his own decisions soon enough. this is still just treating the symptoms, not the disease. I did get some promising info from Dr. Judith Lipton. She is a physician diagnosed with Crohn's. She went on the anti-MAP regemen in December 2004, enjoyed 6 years of remission and says that after going off of all meds last may, she shows no signs of disease. she calls herself cured. I really do want to get my boy on something like that when he is ready.

I appreciate your concern and all your help Gail. You make a valid point. There is no "known" cure for this DD. I honestly believe that there is a cure. we just haven't found it yet. When we first started on this journey with my boy, I said that I believed that there is a bacterial component to Crohn's, similair to the recently discovered cause of gastric ulcers. 30 years ago my mother lost 3/4 of her stomach to a condition that could have been treated with a simple regemen of antibiotics. someone told me that because Crohn's is farther down the tract, the cause couldn't be bacterial. Well, a couple of months ago, it was discovered that a large portion of IBS sufferers(like me) can be cured with antibiotics. I don't think that the bacterial component to Crohn's is far behind in being discovered. when it is, I for one will be thrilled

Post Edited (comedybob) : 3/3/2011 6:55:40 AM (GMT-7)

rifabutin, clarythromycin and clofazamine.

I've said for over a decade now that when there is a controlled trial demonstrating efficacy I'll be the first in line for it. I'm still waiting unfortunately. There was a guy, Jay, on here a while ago on this regimen but he ended up getting surgery.

What is this Anti-Map thingy?

Glad to see positive things happening for your son!

first lab results are back. the news is good.
CRP 48.2, down from 55 in December
ESR 13 down from 45 in December
Feriton 35 up from 14 in December
Hemoglobin 114 up from 95 in December
weight 75 lbs. up from 64 in January
the only disappointment is his Iron still at 4. we wish the CRP was lower, but it is moving in the right direction

Hit 76.6lbs last night. It is the first time since this DD that he has caught up to his younger brother. today is his first GI appt. since starting Remi. Fingers crossed

Official word from the GI. Since Feb.15, my son gained 4 lbs, grew 1/4 inch. his hardening of the bowel has reduced. Iron infusions not recommended at this time, just iron rich foods. hard to find those that he will eat without a fight.