Badger's doing well

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Joined
Jul 27, 2012
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As some of you know, my almost 17 year old son Badger had some symptoms of a flare in June. He had an MRE which showed some minor changes/concerns so we upped his MTX to 30 mg/week from 25.

He had another MRE in late October and the results were nearly identical. His labs have been perfect except for his ferritin which has a slow leak. He has absolutely no symptoms.

So we are leaving him at the higher dose of MTX and doing watchful waiting. And continuing low level iron supplements.

I am so pleased - he was 5'8" at his last appointment. I know he is to although he is too cool to show it. He had significant growth failure at diagnosis and for the first 5 years grew not at all or only a little. So it's exciting to see him growing like this.
 
So good to hear he is doing well and growing.

Question
So he was in remission for five years but not growing at a normal rate or not at all ???
Was he dx at 11 or younger?
 
So great to hear the good news on his height.
I hope the flare will stay a bay until remission comes.
Keep up the good work mom.
Your doing great!
 
Great news regarding Badger.
I so appreciate your sharing the wisdom you have attained on your journey with your son.
What do you mean by his "ferritin which has a slow leak"?
 
Question
So he was in remission for five years but not growing at a normal rate or not at all ???
Was he dx at 11 or younger?

Yes he was dx at age 10. He stopped growing by age 7 and dropped 2+ standard deviations on the growth curve by the time of his diagnosis.

No he was not in remission for 5 years. It took about 2 1/2 years to get him into solid remission. During that time he grew about 1 1/2 inches I think. I'd have to get out his growth records to say for sure. anyway it was very slow compared to normal expected growth which would be an average of 2 inches a year.

Once he got into remission he started to grow but it was slow at first. We didn't see a spurt of "catch-up" growth like some kids get once they get into remission. Instead it's been slow and steady with occasional plateaus. We thought he had reached his peak when he hit 5'7" because he didn't grow for nearly a year. Then in the past six months he's grown another inch.

Just goes to show there's no "normal" here.
 
What do you mean by his "ferritin which has a slow leak"?

Ferritin is the protein that stores iron.

Typically when there is chronic inflammation and/or blood loss ferritin will drop because the iron is being used up faster than it can be replaced by dietary sources.

So it is not unusual for people with Crohn's to have low ferritin levels.

In my son's case, his ferritin level seems to be the first indicator that he has fallen out of full remission. His ferritin level dropped and we started iron supplementation last spring about 2 or 3 months before he had frank symptoms of a flare. We have needed to supplement him ever since so I know he's not back into solid remission. But he's not worse either and the frank symptoms have stopped.

Until he gets obviously worse he is not going to agree to any additional treatment since it would mean stepping up to Remicade.
 
Good to hear everything is going well. He was on Humira and MTX, right? How long did he use humira before dropping it for just MTX? Just trying to get an idea of all the options as we go forward. C doesn't seem bothered with any side effects from the MTX and I can see a time where he may want to drop Remicade if he felt he had been in remission for a long time. Of course, this is thinking way ahead for us since he isn't there yet.
 
He was on Humira + oral MTX about 2 1/2 years and had been in solid remission for almost 2 years when he stopped the Humira and continued on oral MTX alone.

I think the key is to get full mucosal healing before stepping down. I don't know for sure that is what happened with Badger but I strongly suspect it. It is what seems to be associated with extended period of remission in people using remicade who stop it. IF they had full mucosal healing they are much more likely to stay in remission and stay in remission longer. Which makes perfect sense to me.
 
That is exactly how his GI described it. He stated he sets the therapeutic goal at full mucosal healing which parlays into deep remission. He indicated that once C is symptom free for a certain period of time(unsure of time specifics) then he would be testing for full mucosal healing(ie colonoscopy?) and C's chances of a longer remission would be much greater.

He also asserted that achieving this while he is still in his growth period would allow for him to reach full growth potential, which I guess correalates with Badgers growth. Thanks so much for sharing!
 
That's really great news. I love hearing the good things! Hope the methotrexate keeps things going for a long time!
 
Great news!!! I hope you continue to see more growth and more improvement!!! :banana:
 

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