Surgery or new meds?

[coolbeans]

We r no longer remis or humis.
Hi all-- been a while since I have been able to get on here. DD has been in the hospital since a week ago Tuesday. She was dehydrated (possibly from a stomach bug) and in the middle of a flare. She had lost several pounds in no time. They tested her Humira levels and discovered she had developed antibodies. Boo!! So now they have her on some kind of new med that just became available but she can't take it for long due to side effects--it's only supposed to be used as a boost for other meds.

The dr says there is another Med to try but it is only been used in adults so she was going to do some more reading on it. I will have her write down the names to post later.

Another option they have given is a diversive ostomy? to give her colon a break & allow the inflammation to subside. While doing that they would also put n a G tube at the same time. Her scopes show lots of inflammation n the colon vicinity. It looked really bleak Monday after the scopes but Tuesday thru today she has rallied---eating, drinking & having more formed Bms. They r going to start her back on formula tonight to supplement her eating. I hope it works--she has gotten sick both times they have tried it while she's been here.

I don't want to put her thru surgery if its avoidable but the meds sound mighty scary. Anyone have any advice?

 

[my little penguin]

The lease understand surgery doesn't not fix Crohns
The inflammation can and will start all over again after surgery with kids
Especially if they are not on effective meds
Crohns in kids can be very agressive

Tagging mehita and clash
Both kiddos had surgery but disease still and back

 

[Maya142]

I'll tag some more parents who may have ideas:
pdx, Izzi'smom, crohnsinct, Tesscorm, Jmrogers4, Mehita, kernelmom3, Pilgrim

 

[Jmrogers4]

What about Stelera?
Heard of others having ostomy surgery to give the intestines a break and have actually heard good things as they have experienced some relief and allowed them to feel better. It's a difficult decision as you just want them to feel good and have a relief from symptoms and troubles.
Let us know what the name of the drug is when you find out. I remember thinking there was no way we were doing remicade it was a big bad scary drug but now that it's given him his life back I'm a huge fan. Somebody was just asking him since he is doing well if he could stop the remicade and he told them he hopes he can take it forever since he feels so well.
Giving you big squishy hugs and hoping for relief soon.

 

[coolbeans]

The med is tacrolimus 1.5 mg which maya142 & my little penguin told me was a bridge drug till other therapy could start working. They have also advised me about other biologics to ask about & to see about getting a record review done. I have a notebook full of questions for the morning drs meeting. I can hardly wait to get some answers & feedback from these drs.
Thanks for the warm squishy hug-- you don't know how badly it's needed & appreciated.

 

[my little penguin]

Coolbeans tacromilus is a bridge therapy to get kids healthy enough to have SURGERY
It is not a bridge therapy to be used with another biologic
It is NOT used to give another biologics time to work

Bridge therapies to give biologics time to work are
Een
Steriods
Ivig
Or combo of the three

Good luck

 

[coolbeans]

Ok thanks so much for that. I do not want her to have surgery unless absolutely necessary. My guess is the dr put her on that based on the results of the scope Monday then something kicked in & started working & she is doing much better now. Anxious for some answers tomorrow.

 

[Tesscorm]

As was said above, you do need to determine a maintenance med such as stelara, entyvio or cimzia

FWIW, I think there was another girl who had been put on tacromilus??? If I'm correct (maybe someone else will remember as well??), then I'll try to tag her... izzi'smom . She hasn't been here in quite a while but may see the tag... she may be able to give you a bit more info on this med.

I hope you are able to determine a plan soon. The options always seem scary but it's easier to have a plan to go forward and begin to see improvement! :ghug:

 

[coolbeans]

They are going to increase the Humira & see if that will work. If not we are going to try stelara. The person I needed to talk to about a second opinion in Cincinnati wasn't in today so I am going to follow up with them Monday. Luckily it isn't terribly far from us if we need go there. Also we are going to go with one of the elemental formulas for feeding. We get to go home tomorrow-- praise the Lord & hallelujah!!! Thanks for all the great advice.