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Crohn's Disease Forum » Parents of Kids with IBD » We r no longer remis or humis. :(


 
08-27-2017, 08:30 PM   #31
Maya142
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How long has she been off Humira? I'm kind of surprised they would take her off it when she has antibodies. Are they planning to do the loading dose again when they put her back on it?

I'm asking because the longer someone is off it, the more likely they are to build antibodies - the goal is really to have a constant level of Humira in the blood.

So I guess the NG tube was only for supplemental feedings and not for EEN to induce remission? It's great that she is feeling good enough to eat (I agree, that is definitely the steroids!) but if you want to use enteral nutrition to induce remission, then she really needs to be getting at least 80% of her calories from formula/20% food if not more formula.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-27-2017, 09:23 PM   #32
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Her last Humira dose was two weeks ago Friday. They are planning on the loading doses again then increasing the maintenance dose. So the antibodies will increase the longer she is off it? I am hopeful we can start again after the appt this week.

The feedings were originally supposed to get to 80/20 but the peptamin didn't agree with her & they unknowingly think she is going to be able to eat enough to sustain weight gain ( which I believe will be impossible). I am really going to push for one of the elemental formulas to be introduced asap & hopefully by the time the steroids are running out we can be on the road to continual weight gain that can be maintained. I think that was their main goal for the feedings b/c she just wasn't able to gain any weight at all & is way way way under the growth curve for her age. I will definitely question them about using it to induce remission for her which would be absolutely wonderful.
08-27-2017, 09:33 PM   #33
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They could increase...the science is not quite precise yet - some people continue to respond when they have antibodies and others stop responding yet have no antibodies. Sometimes adding something like MTX and increasing the dose gets rid of them or lowers them.

But in general, stopping the drug and then restarting it can decrease the chance of it working later.

I have one kiddo who stopped Humira for about 3 weeks for a minor surgery - when she went back on, it never really worked again.

This was before the antibody tests were used, so we don't know if she had antibodies.

That is obviously the worst case - her rheumatologist said generally people do not stop responding if the break is short (like just a few weeks). They flare, but they regain response usually.

But considering your daughter already had antibodies and now probably has no Humira left in her body, it's a little bit worrisome.

I'm not familiar enough with Tacromilus to comment on why they're doing this. There must be some reason.

I would definitely push for an elemental formula and even try to get her to do 80 EN/20 food. It may REALLY help get her into remission and hopefully the increased Humira dose will keep her there.

Plus, it should really help with growth and weight gain.

Steroids will help with the weight gain, but not growth. And of course, as you taper, her appetite will go away (or back to her baseline).
08-27-2017, 09:34 PM   #34
my little penguin
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Wow
Surprised they would go from "severe she needs surgery "
To "oh she can just eat enough solid food to gain and doesn't need formula "
Wow 😳

Can you get a second opinion at cchmc asap?
I thought they were putting her on elemental formula before she left the hospital?

Stopping humira can make it stop working
Every time you stop the risk of it NOT working again increases significantly

Ds stopped humira more than once
This last time it stopped working

He is now starting Stelara
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08-28-2017, 07:17 AM   #35
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Maya142--from what they explained to me, they are using the tacro as a supplement till the humira or whatever they decide will start working. It is sounding like the chances of the humira working are decreasing by the day.
I am definitely pushing for the elemental formula--by the time the steroids are decreased, we will lose momentum if we don't do something now. She is really gaining weight right now (about 10lbs) so I figure they will all think I am nuts to suggest formula when she seems to be doing so good. However we have been on this track several times & I seem to be the only one who remembers how it seems to end if we don't do something.

Mylittlepenguin--"Wow
Surprised they would go from "severe she needs surgery "
To "oh she can just eat enough solid food to gain and doesn't need formula "
Wow �� "----I know, right!!!! I have pondered the same thing. All I can say there is praise the Lord she had a great turn around but she definitely still needs some help reaching the point she will consistently gain & stay out of a flare if possible.


I called CHOP & they do "peer to peer review" so that may be the route to take; I couldn't get in touch with Cincinnati & haven't had a chance to try again. I will do that now to see what they offer. Luckily they aren't terribly far from us if we had to make the trip there in person but hopefully it wont come to that.

I was concerned about the nonchalant attitude I was getting regarding the Humira when we were released but now I am really concerned. UGH!! Why cant this all just be easy? I pray that it works & they can tell quickly so we don't continue to lolly gag around with my childs health.

On a surprising note, she is very at ease with the ng tube now & loves it for the medication. We still haven't worked up the courage to try to change it & I don't know if we ever will after they traumatized her with it while in the hospital. She keeps asking about the g tube b/c she wants to be able to shower & wash her own hair & swim--if we do elemental formula & it seems to work, we will explore this option more. This is quite a turnaround for her. However, they have school pics Friday & she doesn't want to do them with the tube in--I am leaving it up to her. We went to our favorite Mexican restaurant yesterday & our favorite waiter was educated on the ng tube=it was very interesting to say the least.
thanks.......
08-28-2017, 10:45 PM   #36
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Maya142--from what they explained to me, they are using the tacro as a supplement till the humira or whatever they decide will start working. It is sounding like the chances of the humira working are decreasing by the day.
I understand using Tacro to get her into remission, but I don't understand stopping Humira, especially since she already has antibodies.

The weight on the steroids - some of that is probably water weight and will go away. My daughter always gained a little weight on steroids but usually lost it very soon after we stopped them.

I would definitely push for the tube feeds. They can't hurt -- they will only help. Just because she didn't tolerate one formula doesn't mean she won't tolerate others. We went through several before we found one that worked for us.

I'm glad the NG tube is going well. But she should be able to shower and swim with it!

My daughter had an NJ tube for over 3 months. She swam with it, showered with it, went to an amusement park with it - no restrictions. For swimming, just make sure it is taped well. Same with showering.

With an NG tube it is even easier because it's easy to replace. With an NJ tube, it has to be done by an interventional radiologist.

I know she had a bad experience in the hospital, but it is actually easier to change yourself according to my daughter. She also had a bad first experience - the nurse that put her first NG tube in basically shoved it into her nose.

It hurt a lot and she hated it. She was so upset that night. Her nose was sore, her throat was sore, it hurt to swallow.

But the next night when she did it herself, she was able to feel it, so she knew how much pressure to put. She didn't have to roughly shove it down really fast. She was careful and sipped water while inserting it and it wasn't traumatic at all.

She figured out that for her inserting it through her left nostril was easy. The right one she could do, but it was harder. It turned out this was because she has a deviated septum. Many people have them but most don't find out because they're not sticking tubes in their noses!

I would also make sure to use lots of lubricant and have the smallest tube (6 Fr). She inserted it with the guide wire and then pulled the wire out. The wire made it easier to insert.

You can also learn to insert it on her if she's still too afraid to try it. But my daughter said it was MUCH easier than she expected. And within a week or so, she was doing it in 10 seconds.

As for school pictures, if she learns how to insert it, she could choose to just to feeds at night. That is what my daughter did.

In the long-term, a G tube does make sense, especially since she is having trouble with growth and gaining weight. It is a surgery, but it's not too bad.

CHOP is very big on enteral nutrition, so hopefully they will give you more guidance on that. You might want to check with both CHOP and Cincinnati since both are likely to have quite a wait, and you want your daughter seen soon, given her condition.
08-28-2017, 10:46 PM   #37
Maya142
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For tape - we used Hypafix. It held up well, even in the shower. My daughter usually changed the tape after a swim or shower, because it was so wet but it still worked well.
08-29-2017, 11:45 AM   #38
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We had to go this morning for labs & I signed the consent forms for them to consult with Cincinnati & Philadelphia. Hopefully they can help her GI come up with a workable plan.

I advised the nurse today that I wanted her started on feeds when we go back Thursday. She agreed & said she would set it up.

I will let her read your comments about how easy your daughter said it was to do yourself & also about taping it up. That will make her day. Thanks. We have not been able to do our annual trip to the amusement park so with your help we might get there after all.
08-29-2017, 01:31 PM   #39
Maya142
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There are also stickers: https://www.kidshopechest.com/feedin...-stickers.aspx

They're on medical tape, which is very gentle (worked better for my daughter than duoderm and tegaderm which caused a rash). At first she said they were too baby-ish, but then decided to use certain ones. We got the "girl stickers" and she would only use the ladybug, heart or flower.

She got a lot of compliments on them - even as a high school senior! They sort of took away from the medical aspect of it.

For swimming, we would do a layer of Hypafix (or the feeding friends stickers) and put a layer of tegaderm over it. We tried to position the tegaderm so it didn't touch her skin (since it irritated her skin). We just cut it to the right size.

She would just tuck the tube behind her ear and move on with her day. When she was on continuous feeds - 18-20 hours a day - she carried the backpack around. You can even get custom backpacks on Etsy that are not too expensive - that way she can choose a nice colored one. M used the regular black one that our DME provided us with - the mini backpack that goes with the infinity pump. It worked well.

Inserting it sounds VERY intimidating and my daughter was terrified the first time. But it was surprisingly easy. She did it in front of a mirror, while drinking from a glass of water (through a straw). It really just goes down very easily once you figure out the right angle.

And if one nostril doesn't work or hurts, definitely try the other.

I definitely understand her being scared - after the nurse did it the first time in the hospital, my daughter just sat and cried because it hurt so much.

But when she did it herself, she was fine! First few times it was uncomfortable, but after that she really got good at it.

When she was inpatient doing a pediatric pain rehab program, they had a talent show. M wanted her talent to be inserting an NG tube. She had a GJ tube by then, so she had no need for an NG tube - she just wanted to show off how easily she could do it !!
08-29-2017, 07:58 PM   #40
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That is awesome!! We had a mental picture of your daughter n the talent show. You go girl!!! R is amazed that she can gross the boys out by showing them the tube in the back of her throat. Haha!!

Specifically how did u tape it up when showering/ swimming? Did you do "both" ends? Tape over one nostril?? She was very excited when I told her about your post.

She is getting more comfortable with it-- she even let me post her pic on FB today. We went to her favorite restaurant today & they hadn't seen her n a long time so of course there were questions. Turns out one of the ladies there has CD too. She gave them an education. Haha!!
08-29-2017, 08:09 PM   #41
Maya142
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We just taped it on her cheek - just the part that is coming of her nose. Just how we'd do it normally.

This page has a picture of a baby with a tube: http://www.feedingtubeawareness.org/...g-nasal-tubes/

That's kind of how we did it, except the tape was a little higher up on her cheek because we'd tuck the tube behind her ear. And we didn't use the Duoderm + Tegaderm combo because it really bothered my daughter's skin, we used Hypafix or the Feeding Friends tape/stickers.

The other end (the end you'd connect to the pump) was left hanging, so we tucked it behind her ear. If she is actually swimming laps (which my daughter did), goggles will also help it stay in place.

The one thing I'd say is to take extra tape wherever you go. If she feels it coming unstuck at the pool, get out and put on a new piece of tape. We carried an "emergency kit" containing several kinds of tape and syringes for meds, plus dixie cups to hold water for flushing her tube (if she had to take a med while out).

When she had an NJ, they would mark the part of the tube that was right outside her nostril - so we'd know if it had come out further. They just used a sharpie. We did that too, when she had an NG tube. That way she knew how far down to stick the tube when she was inserting it. If she does decide to learn how to insert it herself, they will teach you how to measure it, so you know how far down it has to go.

But anyway, having that mark helps because then you know if the tube has slipped out a bit while swimming and you can just push it a little further in. It usually didn't move much - we used several layers of tape. But if it did, not a big deal, especially for an NG tube.
08-29-2017, 08:22 PM   #42
Maya142
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I'm sure I've already sent you this, but this has lots of info on taping and the kinds of tapes you can use: https://agirlandhertube.blogspot.com...es-taping.html

We got Tegaderm and Duoderm through our DME supplier. When those didn't work, I just bought Hypafix off Amazon. It is pretty cheap (as far as I remember) and one roll lasts a long time. Same with the Feeding Friends stickers - just ordered them online.
08-29-2017, 08:50 PM   #43
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Wow that is great.. I don't know why we were making such a huge deal of it. You have sent me the tape link but I will review & get some hypafix ordered so we can get back to normal activities.

We have all kinds of emergency kits--kind of like traveling with a baby but bigger items. 😁
Although I did forget her shoes at the last dr appointment--I had to piggy back her thru the hospital. Haha!! Now there r flip flops n every vehicle.
08-29-2017, 09:03 PM   #44
Maya142
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Other thing we carry in our emergency kit - an extra pair of underwear and wipes. My daughter has a make-up bag in her backpack with them. No one would ever her question taking out a make-up bag from her locker in high school or from her backpack.

So if you're going to make an emergency bag for the tube, might as well stick those in too . You never know when you'll need extra underwear with IBD!

The tube is VERY intimidating and scary in the beginning, but just like the blood draws and shots and infusions and hospitalizations, it becomes "normal."

The fact that we own an IV pole? No big deal.

The fact that my daughter can change her G tube? She thinks it's cool that she can do it all by herself (she also enjoyed sending pictures of the disgusting 6 month old G tube to her older sister).

We have three closets full of medications and medical supplies...not a big deal either - we have to keep them somewhere!

You will figure it out - you find a new normal. It's hard at first but it really does get easier over time.
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