New here - Son is struggling,starting humira

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wjack

Joined
Oct 1, 2015
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He was diagnosed @ 18 months old with Crohn's. He is 13 now. After the first flare he was in remission until about a year ago. Since then we haven't been able to get his symptoms under control. Started remicade last October. He did ok for a couple of weeks after each infusion but they didn't seem to stay in his system long enough. Added methotrexate when he first started as a pill and changed to injections. Several hospitalizations, 3 bouts of C-diff and we are still fighting.
Doctor wanted to put him on Entyvio but BCBS has denied it through all appeals because of his age. He has started the process for Humira and we will ho[pefuly start that in a few days. The doctor said he only wants to give this a short time to work and if not if feels surgery is the only option.

L's mainly just had bouts of intermittent pain and and 2-3 bowel movements a day. Right now there is minimal blood. But his pain gets so bad at times he just curls up and cries and moans. He has lost maybe 10 pounds. He was small to begin with. only 84 lbs right now.
The surgery the doctor is wanting to do is to detach the small from the large intestines and give him an ostomy bag while the colon heals. then hopefully reverse it. This terrifies me.

Just looking for advice/ support, whatever you have to give. He has already missed 15 days of school this year. The school has been great but he has no quality of life. Has been anemic and had to get blood transfusion 3 weeks ago. He has been in the hospital 2 out of the last three weeks.

Right now he is on prednisone, tacrolimus, protonix, hyoscyamine for the cramping pain, septra
 
Oh, your poor boy! How frustrating. I'm sure some Humira families can provide more insight than me, but I just wanted to send some support. I totally understand the quality of life thing.

Tagging mylittlepenguin, tesscorm... and drawing a blank.
 
I don't have any advice, but I wanted to say that I'm so sorry that your son is in so much pain. It sounds like he has had a really hard year. Has he had scopes recently? Would it be possible to get a second opinion about the surgery?
 
Big hugs
To you and him
Has he tried een ( enteral nutrition therapy - no food formula only )
It may not fix his gut but will help with growth and weight.
Ds drinks peptamen jr orally
Other kiddos use ng tubes
 
He has had 3 scopes in the last year. Most recent 3 weeks ago. Doctor said he was surprised it wasn't worse.

He is supplementing with Boosts if we can get him to drink it. He is very stubborn. We tried to do the EEN as the doctor thought it would bring about remission but he only lasted a day and a half. He just wouldn't drink. He has done the ng tube for the contrasts and cleanup preps but it was miserable. He fought it and wouldn't swallow or talk while he had it.

There are only Peds GI's at UNC or Duke hospitals. He consults with the other doctors in the clinic at UNC and all of them are familiar with our case because they have all seen him when he was hospitalized. I guess we could take him to Duke to see what they say. We are praying that the Humira will work.

I have no idea how to "tag" people!
 
Tagging means you type the username and they get a notice that a post needs to look at them

I would try to push the een
Ds does partial en with the crohns exclusive diet
Basically a specific diet and 50% formula much easier
The diet is suppose to be for 6-12 weeks but
Ds is on it until we find a better treatment or life at this point

Humira burns a lot and if he is having trouble drinking
It burns less if you have prescription. Lidocaine to add to the humira syringe
Most rheumos use it this way
Humira takes 3-5 months to be effective .
Can you get a second opinion at CHOP / CHP or BCH
 
My daughter actually did better on Humira than remicade. I hope it works for your son too! Like MLP said, the shot does burn but both my girls have been on it (older one is still on it) and got used to it. We let it warm up to room temp. before giving it and ice. M also did it while watching TV so she was distracted.

My daughter hated the NG tube at first but then got used to it. It took 3 days of having it in constantly before she was used to it -- at first her nose and throat were sore and she was miserable. She never did EEN but did use the NG tube for supplemental EN at night to help her gain weight. She had gotten so underweight that her doctors were seriously worried. She inserted the tube every night and took it out in the morning, so no one at school had to know. Many older kids do learn to insert it themselves and then take it out in the morning.

Fingers and toes crossed that Humira works. Is he doing the loading dose?
 
My son was started immediately on Remicade at dx then eventually had to have surgery. Thenot had to move from remicade to humira shortly afterward due to antibodies. Still waiting to see if Humira is our answer.

My son won't drinks shakes either. And although he has been on EN for a couple of months for weight gain before surgery I think we'd be hard pressed to get him to go that route again. He inserted his ng tube every night and took the formula while sleeping then removed it each morning. He honestly didn't mind it at the time but has since said he'd never want to do it again. So I completely understand with the strong will.

Any way hugs...hope he sees remission quickly
 
Children's Boston will give a second opinion remotely.

My son has a weird presentation for IBD and we got some very different thinking by having different hospitals review his case.

I would see if you can bribe him to do EEN for 1 day, then another, then another. Btdt and feel no shame! My son also responded to one dr saying let's try, you can do anything for one dat, right, much better than when I said it.

I am so sorry you and your baby are living this nightmare. My heart aches for him. I hope to hear good news about the humira soon.
 
We bribed too ;)

Wanted to add my daughter was very against the NG tube but now says she's never drinking another shake again. She thought the NG tube was MUCH easier than drinking. We also tried taking it a day at a time, and it was difficult but she eventually got used to it. She also feels a lot better when she's getting the nutrition she needs and so that helped.
 
Paying B was the way forward with EEN. HE saved the bottle tops a nd we paid him for each one.He now uses it every day to supplement food and it is great if he doesn't feel too good as he can drop food intake and up shakes. Works well for him. Try a different brand - sometimes that helps. It does really help so worth persevering with. Good luck.
 
Yep paid Ds by the week for the first een trial
Now we just go shopping for non food treats
Every week or two
It helps so I am ok with that
 
My son is currently on weekly Humira and methotrexate. Can't say it's been his miracle drug so far as he also gets very anaemic and has had 3 blood transfusions and 2 hospital stays since being on it. He is due to have a small bowel resection and temporary ileostomy sometime soon but his stricture is probably due to scar tissue which the Humira was never going to be able to deal with. We're hoping that once the surgery is done then the Humira will keep on top of things.
He is also on EEN. We paid him first time around but now, as he realises it makes him feel better, we no longer need to do that.
Really hoping you find a way forward and that Humira is your miracle.
 
So we decided to see if we could bribe him to do the liquid diet and he agreed. Today is starting the 3rd day and he had a relatively pain free day. He had a little discomfort over night but it was manageable. We will see how long he lasts! Thanks for the advice.
 
So glad to hear he is trying it and it's working
Realize the first two weeks are the hardest then it does get easier.
Ds was permitted food after the first two weeks of een
But only from a limited food list and amount
He has been doing this now for almost 6 months and it works great
 
Great! Hope that it continues to help him feel better. EEN really helped my daughter (both with healing and weight gain).
 
That's great! My daughter is starting her second round of EEN tomorrow. When they see how much better they feel you get better buy in.

Have you told the GI that this is what you are doing? Not that there is anything wrong with it but the doc should be aware of all therapies so they have a true picture of what is going on. For example, EEN acts like steroids with knocking out inflammation so when the doc sees inflammation numbers going down etc they should know there is more than just Humira at work here.

Good Luck!
 
WONDERFUL, wonderful, wonderful!! Three days is a huge success and I am so glad he is feeling some better.

May I share some more EEN tips? I made some missteps during EEN and when my son moved to EN. I know every situation is different so this may not apply to everyone. Keep in mind that for us, getting him to start was hard and we hit a few points where he almost quit. Looking back I think I could have made it easier for him. This is what I wish someone had told me.

For now...Throw out idea that he has to sit at table to spend family time. In fact, don't even let him see you guys eating. He really doesn't have to get used to seeing food or meals bc that is too ambitious. Just get thru the day. Go out with the other kids while one parent hangs with him or heck go eat in a bedroom. He is dealing with enough change, pain, and stress. Let the other family adapt for now, it won't kill them. Don't talk about his EEN if he doesn't mention it. Don't tell people what he is doing if he isn't Up for discussing it bc people will make it a big topic. Dont tell him excitedly how you found Boost at a great price on Amazon or joke that UPS man hates you now for such heavy deliveries. Don't ask how he feels or if he wants to discuss anything. Don't talk about how many days he has done it and how far he has to go. Leave it alone and just let him be and inch his way forward. See the theme here?

Eventually you can reset and ease up on these. But for now, the only thing that matters is making another day happen, whatever it takes!!!

There is an end in sight and it will come closer than you think. You are off and running and doing a great job!
 
wjack - sorry I'm late to this but you've gotten great advice. I hope he's continuing to manage EEN and continuing to improve! My son also did EEN for six weeks and it worked very well for him.

Optimistic - great tips!
 
We had the same struggle to start but once he got going and realized it made him feel better it was much easier to stick to at least until towards the end when he felt so well that he started thinking about food again.

I'm working on trying to convince my son to do a couple of shakes a day now as he really needs to put on some weight it's a little harder to convince him now because he feels good.

Good luck and I hope humira works for him
 
Optimistic - Thank you for the advice. We haven't been eating around him and I told him I'd do the slimfast diet while he is on it since I've been stress eating while he was in the hospital and need to lose a few pounds or more. (He is doing better than i am!!) We told him he is in control of this process and we weren't going to hound him about it. He would need to tell us if he made his goal for the day to get his reward.

He says he is seeing the benefit of it with the decreased pain! The Humira arrived today, and we go on Thursday to get the first round of injections at the doctors office.

Crohnsinct - I haven't told the doctor yet but I will send him a message and let him know. Thanks for the advice. I didn't think about it throwing the inflammation numbers off. He had recommended it as a course of treatment the first time we tried it.
 
Welcome! My son is doing well on Humira, 3.5 years now. I hope it works for yours! Be aware the injections really hurt. It's not the needle pain, the medication is acidic and burns. It will be quite shocking. The nurse does the loading dose, probably with the epipens. But for the maintenance every 2 weeks, we use the syringe and go slower. Also, we ice up the site for 15 minutes while I let the syringes warm up a bit.
 
Had the Humira starter dose this morning. He did great. I could tell that they really hurt but her powered through them! Praying this gets us to remission!
 
Well done L! The first loading dose is the worst. Once you get to just one shot every 2 weeks, it's much easier! Sending hugs :ghug:
 
Glad it went well, hope it really works. That's great he is trying the EN, hope it keeps going well
 

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