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Update on Matt

Great news! Labs back after 2 months since stopping 6 mp.....liver is back to normal!! YAY:dance:
SED rate is still down so no sign of inflammation coming back and at the moment pentasa is holding it down.
Can't describe my current relief.....I feel a bit like crying. What a weight lifted off me.....(not to make this about me). But I was getting close to needing anxiety meds.
Knock on wood that it stays this way.......I'm just thrilled the liver is normal again.
 
It's good that the Pentasa is working, but in case there is ever an isue again, my 14 year old daughter has had a lot of success continuing 6MP by adding Allopurinol to moderate the creation of the liver-toxic metabolite. Without Allopurinol she'd not be able to take 6MP for the same reason as your Matt (and in her case, she's allergic to Pentasa.)
 
Thanks...we did look into that and I can't remember why that's not an option....but I recall there being some reason for us not to do that....I know the dr said that he felt that would not be successful...should the inflammation come back I'll look into it again..thanks.
 
By the way muppet, How is she doing lately. Your story is quite gripping...I feel for you And I can only imagine how difficult that was and is.....not sure I could have kept up with all that...Have you researched LDN? What are your thoughts on LDN?
 
We haven't tried Naltrexone yet. I'm aware of it, but only just. I mentioned it to our specialist in Boston a while back but he seemed unimpressed by it. That was two or more years ago.

Right now she's doing very well. An antidepressant, of all things, seemed to help a lot.

Thanks for asking! :)
 
:dance:Good for you guys!!!:hug:
Yes the mental game we go through, I think could land all us in the loony bin.:)
 

crohnsinct

Well-known member
Wow Dutch! That is awesome news! I hope it just gets better and better for you all. I think the tattoo was your lucky charm! I say tattoo's all around!
 

Tesscorm

Moderator
Staff member
Great news Dutch!!! :banana: :banana: I can certainly imagine your relief!!!

Enjoy, enjoy, enjoy!!!!!! :D
 
Woohoo! Great news, I am very happy for you. Think I'm heading for those anxiety meds - beginning to develop a twitch ;)
 
Dutch so happy to hear such great news! I would definilty look into LDN as an option. We have had great success with it although every kid is different it can't hurt to research and try it.
 
How did you guys convince your docs to start the LDN? Ours just sort of chuckles when we bring it up, and he's a pretty open minded guy who works at Boston Children's with close ties to Harvard Med.
 
Fantastic news about Matt, Dutch!!! So glad to hear it! Hoping Pentasa is your long term answer...I have a friend that has done Asacol alone for YEARS and only has diet-related flares. Wishing you many, many good labs to come lol!
 
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