Still lost in what to do

[SupportiveMom]

Today Dani had her GI appointment. I normally come away from these feeling some sort of hope but this one I felt so deflated. Funny because I got everything I asked for.

Dani is still not in any sort of remission, going an average of 9x a day, 1-2x more at night, and has blood (and sometimes vomits). We are on Prednisone, Prevacid, Methotrexate & Humira. Her blood work (we get done monthly) came back the best it ever has since diagnosis, with everything in the normal range except her iron is just slightly low. She has an amazing GI Doc, one I wouldn't want to drop as she even has called me on her vacation to check on Dani & has given me her cell phone number. She is AMAZING, one of the top of her field in our area. We waited to get her and I am glad we did, she is a rare great one.

My goals today were 1. Understand better where her Crohns is in her body (as I was thinking I was getting confused) and determine if it is time to do the testing again 2. Discuss potential next steps including surgery as so far the Humira Mtx combo isn't making a difference 3. Ask if someone else should consult/ 2nd opinion for a fresh set of eyes in case she has something along with Crohn's that could be preventing her from relief from her symptoms.

1. I liked where I 'remembered' where her Crohn's is. I thought it was just near connections in her large & small bowel & in her esophagus. I found out today I must have created that in my head to save myself from crying even more because she has it so bad everywhere, she pointed out the non diseased sections of her digestive tract because that was faster, and there isn't much of it. This now made her an unlikely candidate for 2.-surgery, as from her last scope there wouldn't be enough left for her to function from. After the Humira/Mtx there isn't anything really approved for kids yet. There are a few potentials, but so far not anything she would say to recommend. 3. We are starting with a whole new set of eyes while holding onto our doctor in hopes they have some suggestions at Sick Kids. On top of it we have ultrasounds, MRE & colonoscopy all being scheduled now.

I got everything I wanted and I still feel lost and deflated. Thanks for letting me share.

 

[Charleigh]

Okay, going out on a limb here.....are they double sure she doesn't have Celiacs? If her labs are good and she is on Crohn's meds, it might explain why she is still having bowel symptoms. As you might know, those two diseases often "walk together" and I hear of so many people who think they only have Crohn's, they don't get better, and then they find that they have Celiacs in addition or in lieu of Crohn's. Just a random thought.

 

[Jmrogers4]

You might check out vtfamily posts. I believe her son ran through all the meds and are now on Stelara even though it has not been officially approved for kids he I believe is doing quite well on it. There is another mom whose daughter is on tacrolimus with good results. Not standard treatments but when they have tried everything maybe thinking outside the box.
Hope the new set of eyes helps also and you get some answers/plan to get her feeling better

 

[SupportiveMom]

Celiac hasn't been tested. I know a few years back she was tested for foods and wheat was not an issue. It is a good question I will explore. It is possible she has IBS & IBD an we are looking into that too.

Jmrogers I will look into that. They are in the states though I assume being vt? Canada and the US do not have the same drug approvals so maybe it be available. Worried about my kid being a guniea pig, but I am thinking I may not have much choice.

 

[Mehita]

I just wanted to add that Celiac can pop up anytime. Just because you test once doesn't necessarily mean it won't show up later in your lifetime. Sometimes big events can trigger it too... surgery pregnancy, major illness.

And even if it's not Celiac, have you considered other food intolerances? There are so many out there theses days. Everything from red dye to gluten.

I hope you get answers soon.

 

[SupportiveMom]

It is something I will look into. Allergies, especially to medications are an issue for Dani. The allergy wouldnt leave the blood still happening which I view as a sign the meds she is on just aren't enough or aren't working for her. She has been on Humira now for 2 months so I know we may get lucky and things might just work but I'm not feeling optimistic.

 

[Maya142]

There's also Cimzia - I believe Brian'sMom's son is on that. My daughter is currently back on Humira but Cimzia is what we'll try next if Humira doesn't work. I'm not sure if it's approved in Canada though.
Don't lose hope though - the first time my daughter was on Humira, it took 5-6 months to work once we added mtx. When it did, it was like a miracle.

 

[Brian'sMom]

When it looked like Humira wasn't getting it done for us then insurance approved the use of Cimzia. Humira and Cimzia aren't approved for pediatric use...only Remicade. The jury is still out for us. We are having MRE on Feb 1st to see if ds is surgery candidate. They think his terminal ileum is not doing well and that is why the meds aren't working. Hang in there! Our Mayo doc said the biologics aren't the end of the med road. He won't elaborate beyond that until the MRE results.

 

[SupportiveMom]

Remicade & Humira are approved for children for Crohns in Canada. It appears Cimza & Stelera are not yet approved. That may be a benefit of going to SickKids, because if there is a trial, she can get onto it there with one of those drugs.

Please let me know what the other options are non-biologic or non Anti-TNF. We are going to rescope/re-MRE, re-ultrasound, etc. This is where I am hopeful for the additional sets of eyes, because with no meds to try in sight on the market, and surgery probably off the table, I am very interested in other options.

I will hold onto hope on Humira as much as I can Maya, thanks. Hard when we just keep seeing your kids quality of life dwindle down more & more. Brian'sMom, keep us posted on his next steps.

 

[my little penguin]

Big hugs
Humira took way long than remicade to work for DS .
Is she at the adult dose ??
And how often are her shots ?
We were told they could increase dose and frequency if needed.
DS moved up from 20 to 40 mg once every two weeks after two months .
We finally saw relief with that after three more months so five months total.
Remicade took seven weeks .
Is she on vit d??

 

[Maya142]

Yes, definitely agree about increasing the dose - my daughter is on 40mg weekly and was also when she was on it last time, she was your daughter's age then.

 

[Sascot]

Sorry to hear things are not great. I get a bit confused as to which kids on here have tried the EN (or refused to try :smile.
If she hasn't tried it and is willing (apologies if you have already mentioned it in another thread) then it might be worth trying. It may heal some of the inflammation giving the drugs more time to work. Good luck for all the tests

 

[DustyKat]

I don’t have anything to add to the fab advice you have been give re meds and dosages. :ghug:

To give yourself a bit of breathing space and time to think would it be worthwhile your daughter doing an 8 week stint of Exclusive Enteral Nutrition? It will concurrently give her full nutrition and bowel rest, perhaps it will compliment the meds and give them a bit of a kick start to getting your lass into remission. Maybe worth a try??

:hang: mum, you are doing a fab job with your girl. :heart:

Dusty. xxx

 

[Charleigh]

Celiac hasn't been tested. I know a few years back she was tested for foods and wheat was not an issue. It is a good question I will explore. It is possible she has IBS & IBD an we are looking into that too.

It doesn't show on allergy tests and labs for it are iffy. The best way is an endoscopy. If there is an upcoming colonoscopy, they could check for celiac at the same time.

I hope you find answers :ghug:

 

[Tesscorm]

Sorry you didn't receive better news at the appointment. I really hope that the test results plus another opinion from Sick Kids will give you some direction. :ghug:

 

[imaboveitall]

Just to say V is in a similar place, almost out of drugs (doc alluded to getting Cimzia for her on a "compassionate use" as not approved for her age) and discovered TODAY disease is progressed despite her being in a clinical remission per labs/symptoms. He said her CDAI would be ZERO yet she is still very sick.
It is a scary horrible place, I am there with you. :confused2:

 

[SupportiveMom]

Cimza isn't approved for 16? ugh this could be an issue. Cool you are in Statesville, my sister is in Greensboro. I am hoping to get my daughter down this summer to visit with my sister for a month if we can get her health to improve. I see you did Humira first and now Remicade. How did you chose Humira first?

 

[imaboveitall]

We tried Humira first because shots at home were more appealing than going to hosp for infusion.
What the heck are we to do when we are out of drugs? Doc mentioned TPN. Has your doc mentioned it as a possibility?

 

[SupportiveMom]

Been there done that... didnt help us for remission but we were only on it for a month and the goal for Dani to be on it was to get her vitals back to a normalcy and help her gain back some weight. I have heard it worked for some if you do it for 6-8 weeks solid. I have no idea what we are going to do when we run out of meds, which seems soon...

 

[kimmidwife]

Supportive mom,
Re mi cadre may be an option if humira doesn't work. Also look into Low dose naltrexone that was the only thing that worked for us. Most doctors only use TPN as a last resort as there are risks with it.

 

[SupportiveMom]

Kim thanks for the thought about Remicade. Dani has already been on it, ended up building antibodies to it, and had an aniphylaxis reaction requiring hospitalization overnight. It was 6 months into the drug, and from what I understand not common to react as quickly. She has medicine allergies like Penicillin and a couple others so this I think might compound the problem.

I didn't know there were risks associated with TPN. It was almost immediately after admitting her to the hospital she went on it at diagnosis. Once she had a PICC line inserted she quickly started on it. Someone else, I think Tesscorm mentioned LD naltrexone. I'm going to ask on that too. Thanks

 

[Jenn]

You could try to find an IBD clinic near you for a 2nd opinion, or fresh approach. Crohn's can be refractory for some people, but there are new drugs coming to market all the time. Hang in there!

 

[imaboveitall]

TPN is not risk free, for sure. It can and does damage the liver.
Will let all here know what plan is made when the triad of experts have their case conference on V.

But no matter how big their brains, the available drug list does not change. So what they shall say, I have no idea. :confused2:

 

[vtfamily]

SupportiveMom,
My heart goes out to you. Crohn's is a tough disease and it can be difficult to keep our eyes on the "hope" as moms. Kudos to you for not giving up on that.

vtfamily here (actually vt is for our last name, we live in California). I'm glad jmrogers4 mentioned us to you. I hope I can lend some support.

I just read through your posts. We navigated through much the same issues last year. When Gus' Crohn's is active it goes through a couple of major phases. 1) Inflammation throughout the entire bowel. 2) Severe strictures.

We discovered that the Humira has stopped working when Gus developed a new stricture at his terminal ileum and had inflammation throughout his bowel. Our GI doc always wants to try to treat medically first, before exploring surgical options. We knew we couldn't go back to Remicade and didn't want to rely on Prednisone too long. But, what to do when you are at the end of the Crohn's medical/drug road?

While we looked into other, better options, our GI decided to try Tacrolimus (anti rejection drug for liver transplant patients) as a "bridge," because it is thought to help calm down the auto-immune response in the gut and allow the inflammation time to heal. The Tacrolimus seemed okay for awhile, but by the end, Gus was in so much pain it became clear that it was not effective for Gus. (That is not to say that it hasn't been beneficial for other Crohn's kids.)

Meanwhile, we looked at Tysabri (developed for Multiple Sclerosis and potentially promising for Crohn's). The black box warning on Tysabri is terrifying (due to the PML virus). Fortunately, they have developed a test to determine if a candidate might be more prone to developing the PML virus before they try the drug. Gus did the test. He tested positive for the PML antibodies, so no Tysabri.

The stricture at Gus' terminal ileum was getting worse and he needed surgery to remove it, but surgery was not possible because the inflammation was out of control. His insides were a gooey mess. The steroids and Tacrolimus were not working.

He needed complete gut rest. The doc inserted a PICC line and he went on TPN. It did seem like his pain was easing when his gut was not attempting to pass food. We also decided to try Stelara. After a few months of TPN and Stelara the gut inflammation was reduced enough and the surgeons finally agreed to remove the TI stricture.

March will mark one year on Stelara and ten months since the stricture was removed. Gus has not felt this good for this long in years...maybe not since the onset of his disease almost ten years ago. He hasn't had any pain days or hospital days this year. No new strictures. No plans for surgery. He is adjusting to life as a "normal" eighth grader...school every day (and for the entire day), doing well in school, and growing relationships with his friends as "Gus," not the sick kid.

I hope that helps. Feel free to reach out to me anytime.
Best wishes to you and your daughter.
Cheryl VT