So far, so good

[wjack]

So 2 1/2 weeks now and L has had no pain and normal BM's. He said the were "pleasantly solid" and no blood! :dance:
He stayed on the liquid diet for 2 weeks and got enough bribery money from us and relatives for several things including an Xbox 1. He stopped once the symptoms went away. I don't know if it was the bowel rest or combinations of that and the news meds kicking in but it is soooo nice to have some relief! The labs looked decent from the doctor visit last week. Hemoglobin is almost back to normal. Sed-rate of 10, although his CRP was 5. I was happy with sed rate dropping 25 points! He also gained 11 pounds in 20 days! Wish I could lose that much!
We are holding our breath and hoping it continues.

 

[my little penguin]

Is there a reason why he didn't complete the necessary 6-8 weeks
Since stopping early typically means the symptoms will be back...


Hope things stay calm but please be prepared
docs don't prescribe 2 weeks for a reason
Tagging crohnsinct since she just went through this one

 

[wjack]

my little penguin - 2 weeks was all he said he could (was willing) do. The doctor didn't actually prescribe it but suggested it as an option back in August before the 2 hospitalizations. We wanted him to try it then to bridge the gap and hopefully get some relief while the new meds started to take affect. He saw a difference in pain intensity and frequency within 2 days. He has been back on solids (he had just been doing Boosts shakes) for 2 weeks and eating everything in sight! We tried to get him to stay on it longer but teenage boys always seem to know better. The doctor was thrilled with his progress when we saw him last week though.

We know the symptoms may return anytime. We will take any improvement over what we had been dealing with!!

 

[CarolinAlaska]

Hopefully the two weeks was enough. Congrats on the wonderful results so far. I'm jealous!

 

[crohnsinct]

So glad he is feeling better...those are some hefty bribes! Don't tell my daughter! All she got was a new phone charger cable and a pair of shoes:ylol:

Two weeks is not enough to induce remission. May be enough for him to start feeling better. However, once food is introduced, inflammation typically returns. Also food reintro is supposed to be done a bit more slowly.

I am not familiar with how long it takes Humira to become effective but I guess it is possible the EEN bridged him to the effectiveness point.

The thing that would make me a bit leary is that your doc said they only wanted to give Humira a short amount of time to start working otherwise they want to move to surgery. I hope the two weeks of EEN was enough but if it wasn't would your son consider hopping back on? The thing with EEN is it can be less effective with subsequent uses so you typically want to try to make sure you do a complete round to get the most out of it but worth trying again anyway.

O did 8 weeks exclusive and painfully slow reintro and then Remicade was able to take over.

T did 6 weeks exclusive, another 2 weeks at 20% food and then 4 week of 50% and inflammation came back at the 20% level.

She is trying EEN for a second time. This time 5-6 weeks exclusive followed by 8weeks at 20% then 50% until inflammation returns.

 

[wjack]

Crohnsinct - The bulk of the bribe $, he recruited himself from realitives!:yfaint: The plan was to reintroduce food slower but he blew that the first day back at school! I think he would do it again since he saw that the EEN worked. Praying we don't need it though (but realizing we may).

I think the healing was a combo of the steroids, tacrolimus and maybe bowel rest from the liquid diet. His GI just didn't want to wait too long if he didn't see any improvement at all. He seems pleased with the progress and didn't even mention surgery last week. We have only done the starter dose (6 injections) of Humira, the next shot is tomorrow. I think that is when most people start to see Humira take over and work from what the GI has said. We are supposed to start weaning down the tacro and have already started weaning the prednisone.

 

[pdx]

That's great that your son is feeling so much better! I hope that Humira works really well for him.

 

[my little penguin]

Humira takes 3-5 months to reach full effectiveness

 

[Maya142]

Humira definitely can take 3-5 months to reach full effectiveness. For my older daughter it took 3 months and for my younger it took 6-7 months!

It all varies though - Some kids notice an immediate difference and others take months.