11-29-2017, 11:01 PM   #31
my little penguin
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Please understand Stelara is very very slow acting
Our GI told us six months to be effective so did rheumo
Ds started Stelara in August
Still weaning off steriods now
He does drink 50% calories from neocate jr so not sure how much that is helping his GI tract while we wait
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11-29-2017, 11:10 PM   #32
Maya142
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Why did they take her off all meds? Wasn't she on Humira and MTX? I understand needing a change in therapy but taking her off all meds seems like they're setting her up to flare - especially since Stelara takes a while to kick in.

At the very least I would ask about putting her back on MTX.

She may need to do EEN while waiting for Stelara to kick in, so the g-tube definitely sounds like a good option.
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11-29-2017, 11:17 PM   #33
my little penguin
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Yeah definitely that ^^^^
Ds stayed on mtx while starting Stelara and pred AND. 50% formula
11-30-2017, 09:01 AM   #34
CarolinAlaska
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Let us know what your GI says about a G-tube. What happened? I thought she got the hang of inserting it? My daughter is inserting hers nightly (about 10 days on her own now). It was a hurdle to get her to do it, but once she started doing it, she hasn't had a problem. Would it help if we post pics of our kids with tubes to encourage her that she isn't alone?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
11-30-2017, 11:23 AM   #35
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I apologize that I was not clear--we had to stop the humira about a month ago because she had developed antibodies. She is still on imuran, pred & tacro again. She acts like she is in a flare right now. 🙁
11-30-2017, 01:52 PM   #36
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Oh, I remember now. Tacro is a pretty strong med - usually used to prepare for surgery.

Hope she is feeling better today.
11-30-2017, 01:55 PM   #37
crohnsinct
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I hope they can get her on a maintenance med that works soon. Prednisone, Tacro, Imuran and still heading into a flare? Poor kid.

Curious, is she using oral tacro or suppositories?
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11-30-2017, 10:33 PM   #38
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She is taking oral tacro. The GI is going to make arrangements for us to meet with the surgeon about the G tube & they are trying to get the stelara approved. I pray it will be a quick process. I gave her the option of tube or drinking formula. She tried drinking--she got a lot more than I thought she would but has decided to try the tube tomorrow. I took a sip-- that is some of the nastiest stuff I have ever put in my mouth. Yuck!!! Many kudos to those kids who can drink it daily--you are amazing!!
11-30-2017, 10:47 PM   #39
Maya142
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Did they say why they are not using MTX? Considering she has developed antibodies to two biologics relatively quickly, I would think she needs something like MTX or 6MP to prevent their formation. They're not planning to keep her on tacro are they?

There are just not that many biologics and she's going through them pretty quickly...

Glad you are meeting with a surgeon for the G tube. It can also be done by an interventional radiologist, but every hospital does it differently. It is mostly done laparoscopically or by interventional radiology now (endoscopically).

Feeding Tube Awareness has lots of good info about the surgery on their website. Her abdominal muscles are going to be pretty sore - so things like sitting up from lying down, coughing, laughing and going to the bathroom will hurt at first. The first few days are rough but then it gets better, like with any surgery. The important thing to remember is that every day will be a little bit better.

My daughter went to college two weeks after the G tube was placed, so she feeling pretty good within 2 weeks.

It was 3 days in the hospital for my daughter. Some kids are home within 24 hours though - she is just complicated. Make sure to ask what will be used for pain management. Some kids need opioids while others do well with just Tylenol. It really varies.

Good luck!
11-30-2017, 10:52 PM   #40
my little penguin
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Stelara is tricky to get approval for in kids
It took over 2 months to get it approved for DS
He also takes Stelara with mtx
For joints AND to prevent antibodies

The good news is the shot doesnít burn
12-01-2017, 09:31 AM   #41
coolbeans
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Did they say why they are not using MTX? Considering she has developed antibodies to two biologics relatively quickly, I would think she needs something like MTX or 6MP to prevent their formation. They're not planning to keep her on tacro are they?

There are just not that many biologics and she's going through them pretty quickly...

Glad you are meeting with a surgeon for the G tube. It can also be done by an interventional radiologist, but every hospital does it differently. It is mostly done laparoscopically or by interventional radiology now (endoscopically).

Feeding Tube Awareness has lots of good info about the surgery on their website. Her abdominal muscles are going to be pretty sore - so things like sitting up from lying down, coughing, laughing and going to the bathroom will hurt at first. The first few days are rough but then it gets better, like with any surgery. The important thing to remember is that every day will be a little bit better.

My daughter went to college two weeks after the G tube was placed, so she feeling pretty good within 2 weeks.

It was 3 days in the hospital for my daughter. Some kids are home within 24 hours though - she is just complicated. Make sure to ask what will be used for pain management. Some kids need opioids while others do well with just Tylenol. It really varies.

Good luck!
They haven't ever mentioned MTX to us. I will definitely ask about it though especially if it will help with the antibodies. The dr got to see first hand what we are dealing with--she was rude & ugly--she told her she wasn't doing the tube or the formula any more. I am just glad others see what I get to see. Her new quote is 'its my body & I should be able to make my own choices' UGH!! We tell her she has a voice but her dad & I have the final say. The hubby was telling the dr we would try the tube again last night after she & I started talking about the G tube. I asked him what part of the last week he had missed? I have tried to get her to put the tube in every night & it wasn't happening. It was a regular circus!!! Hopefully they will have someone contact us soon regarding the G tube, Stelara, 2nd opinion in Cincy & when my padded room will be ready for me to go live in. HA!!
12-01-2017, 09:37 AM   #42
my little penguin
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Be prepared given her age
They (GI/surgeon )may not put in a GTube unless your Dd states it her wish as well
Teenagers unfortunately get a small say unless itís life threatening
12-01-2017, 09:53 AM   #43
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She wanted it the first time she was in the hospital in August but she was not up to a decent weight for them to put it in. She is in better shape now.
I don't think it is a bad thing for them to have a say in their care but she needs to know the facts & she doesn't care a thing about it. I asked her last night what she thought would happen if she stopped the meds--she didn't know. It is so frustrating.
12-01-2017, 10:16 AM   #44
my little penguin
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Oh I agree 💯 % with you
They donít know enough to decide

Have you given her the comic books by ccfa
Ibd and me
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Toilet paper flowers

https://www.google.com/amp/s/www.inv...m-origin-story

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http://justlikemeibd.org
12-01-2017, 12:00 PM   #45
crohnsinct
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Ahhh yes! Welcome to the teen years! All teens want control. Totally developmentally appropriate.

Unfortunately when you have a kid with a chronic illness so much is at times out of control that when they exercise their control it is medical decisions. Bad ones.

Totally annoying isn't it? Just wait until her senior year in high school.

Have you gotten her into a therapist who specializes in kids with chronic illnesses? There is a lot being reported now about the psycho/social affects of IBD and the importance of clinics having therapists on hand. Perhaps your GI can suggest someone. They may be able to help her with processes info, pro's, cons and coming to solid decisions.
12-01-2017, 12:32 PM   #46
my little penguin
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One other thing does the GI speak directly with her
And explain what is happening /what the options are
If you do xyz
What are the risks
What are the alternatives
And what happens when you do nothing

I think a lot of kids who were dx younger
The GI still has the convo with the parent
Talking around the kid
Not including the kid directly

Ds rheumo does the opposite and has from day one
He only talks to Ds
Occasionally asks me if Ds missed anything
That works well since DS is ďin chargeĒ in his mind at least
And he can make more informed decisions

Still working on that with GI
Old habits
12-01-2017, 12:35 PM   #47
coolbeans
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Ahhh yes! Welcome to the teen years! All teens want control. Totally developmentally appropriate.

Unfortunately when you have a kid with a chronic illness so much is at times out of control that when they exercise their control it is medical decisions. Bad ones.

Totally annoying isn't it? Just wait until her senior year in high school.

Have you gotten her into a therapist who specializes in kids with chronic illnesses? There is a lot being reported now about the psycho/social affects of IBD and the importance of clinics having therapists on hand. Perhaps your GI can suggest someone. They may be able to help her with processes info, pro's, cons and coming to solid decisions.
We have been seeing a therapist locally in our small town but I don't know how much it is helping. I asked the GI yesterday about getting her someone to talk to but they weren't really all that helpful either. Apparently there is a "coping clinic" but it just occurs twice a month--I asked for us to be on the list the next time it happens. I have been scouring the internet trying to find someone around but I have hit nothing but dead ends. I will keep searching.
My husband left her at school with the guidance counselor this morning. She told him to leave & she would work with her. She hates school & pretty much everything else except her room. I hope she can get her to talk to her.
I totally dread high school. This year has been a doozy!!! We may have to get matching white coats for the whole family.
12-01-2017, 12:44 PM   #48
coolbeans
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mlp--she talks to me or hubby first then she tries to talk to dd. DD wants the control over her choices but says to me, oh I don't like to talk to the dr. I listen to her but I don't like what she is saying. Me--are you kidding me? You cant tune her out or not talk to her just b/c she is telling you things you don't want to hear.

I don't know if any of you watch the big bang theory, but if you do, she reminds me so much of the character, Sheldon Cooper, that it is not funny!! Example: this am, we tried to give her the pred--I had gotten it from the hospital pharmacy so it was different & she had a meltdown & didn't take it all. My hubby got her to take what little she did then he called me. She acts like this every time there is the least little change in anything. I pray we can find someone for her to talk to & connect with before she makes herself really sick by being obstinate.
12-01-2017, 02:19 PM   #49
my little penguin
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Sounds like OCD in my non medical mommy experience -Sheldon on Big Bang has severe OCD
A true psychologist-not therapist they only have masters degrees can help with cognitive behavioral therapy
So itís not being stubborn itís a true mental thing
Recommend the book ďtalking back to OCDĒ


We were blunt with the GI
Talk directly to my child
They are the ones who need to tell you and start self care
We just keep pushing that way the GI

Hope you find a good psychologist
12-01-2017, 03:03 PM   #50
Maya142
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Remind me how old she is?? 13 or so right?

I think that if the GI and surgeon truly believe she needs a G tube, they will try to reason with her and explain why she needs it. And if she is STILL completely refusing and you and your husband still want it done, then sometimes they actually convene the ethics board and they make the final decision. At least, we were told this is the process at our children's hospital - I don't know if it's the same everywhere.

We were told most often they do agree with the parents and not the kid.

Unfortunately, when your kiddo hits 18, that all changes - it is ENTIRELY her decision, even if it is life-threatening. My daughter was so underweight that she developed an arrhythmia and they kept telling us her organs could shut down but because she was 18, she had to agree to the NJ tube.

But I think since your daughter is only 13, you and your husband would be able to say to the G tube even if she is against it.

I do think it's a good idea for the GI to talk to her and for you to talk to her about the risks of NOT getting the G-tube. You can tell her about my daughter - she missed half her senior year, was basically stuck in bed all year and got very, very sick because she lost so much weight. It caused Refeeding syndrome, which caused electrolyte imbalances and heart issues which can be fatal. It's not something to mess around with.

I would also show her pictures of the G-tube - the Mickey buttons specifically. They are used most often once the tract has healed (first they put in a long tube and then after it's healed, they switch to a button). They are TINY and you really can't tell that my daughter has one unless she shows you.

Honestly, I would make the choice between the NG tube and the G tube, not between the G tube and nothing. If she thinks the alternative is the NG tube, I think she is much more likely to agree to a G tube.

Is there a behavioral health/psychology dept. at your children's hospital? That is where you're likely to find a psychologist who has a lot of experience working with kids with chronic illnesses. I know it's a drive, but sometimes there's no other way to find a good one locally. We drive 1.5 hours to see M's psychologist and I can honestly say it is SO worth it.
12-01-2017, 03:26 PM   #51
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mlp--the book is in my cart & fixing to be ordered!!!

Maya142--she is 13. I don't think she has a problem with the G tube--when she was really sick & hospitalized in Aug, they talked to her & us about it and the child life specialist there brought in all kinds of info about the G tube. She was very open to that but wasn't physically well enough for it to be done. Fast forward to now--GI said yesterday that right now her body would be in better condition to do the surgery than it had been. I use your daughter & her 'adventures' often when I am telling her about different things. Thanks for sharing her stories so we can share them with our crohnies. I will check about the behavioral health/psychology dept--you would think a huge childrens hospital would have these resources widely available to those who need them. I am not averse to driving any distance as long as she can get the help she needs--its just finding it that stinks right now.
12-04-2017, 02:26 AM   #52
Catherine
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Sheedon reminds me of my middle daughter, thankfully not my daughter with Crohn's.

Like Sheedon she has a chair that's she always sits in to do her homework. She is a very black and white person. She was13 years old when she was dx as Asperger. Can't tell that upper high school wasn't hard because it was her and whole family. My favourite saying at time was don't let anyone tell you school are the best years of your life because they are not. Life got much better after high school.

Your daughter's dr need to be clear what she options are and why the doing nothing is an option and why it a bad option.

Eg. Not putting the feeding tube would result in g-tube. This should only be said if using a g-tube is an option because once she agrees to the g-tube you to act before she has time to change she mind.
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DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-04-2017, 12:22 PM   #53
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Catherine, she is very black & white also--there is no gray allowed. UGH!! I disliked school also but have never told her that. She constantly complains she has no friends or a life. It is very hard to hear & want to help & cant.

The G tube is going to be a done deal as soon as the GI office can get the appts in order--she wont even try with the ng tube.
12-04-2017, 12:26 PM   #54
Maya142
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Glad she is getting the G tube.

Is there anything else she enjoys doing? For example, a hobby? Could she take a class outside of school - I'm thinking something like a dance class or soccer team or art class or choir. Anything really, that could get her to meet some new kids and make some friends.

Poor kiddo. Sounds like she really needs to be seeing a psychologist. I hope you can find one soon.

Glad the G tube is going to happen. Let us know if you have any questions about the surgery - you can always PM me too. I even have some pictures of M's tubes if she wants to see.
12-14-2017, 04:31 PM   #55
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Hi everyone, just wanted to update. We have an appointment to meet with the surgeon next week to talk about the G tube. My hubby doesn't think she needs it now b/c she is eating & feeling good. Hmm bet that is due to the mega steroids we are taking that have turned her into a raging bear at times. I hope to educate him some more before we go.

Also we go to Cincinnati in January--I am kind of nervous about that for some reason. We have three days worth of tests (MRE, flex sig, endo, gastro, colorectal surgery). I guess they are covering all the bases but it makes me anxious. Crazy huh? She will be at one of the best IBD hospitals around & I am anxious!! UGH!! Please say a prayer for us.

I found someone for our whole family to talk to & we met with him the other night. I hope he is able to help her and us. She doesn't think she needs to talk to anyone about anything. She tells me I am the one who needs help--I totally agree with her--haha!! but she needs it too. Whisper a prayer there too.

I hope each of you have a wonderful Christmas!!
12-14-2017, 05:00 PM   #56
Maya142
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Do not agree to a flex sig - I would insist on a colonoscopy. Why would they put her out for an endoscopy and not do a full colonoscopy? Especially for a kid with Crohn's!!

I would also make sure you and your DH are on the same page before seeing a surgeon. Or at least, talk about it before you go and don't argue about it in front of your daughter. My daughter always viewed it as a "bad thing" and that made dealing with it more difficult.

How is she feeling about the G tube surgery?

I hope you are able to make some progress with the new psychologist/counselor. Fingers crossed. It's a tough enough age without adding a chronic illness in the mix!!!
12-14-2017, 07:43 PM   #57
crohnsinct
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^ Totally agree on the flex sig!

Now about that G tube. I didn't reread the whole post but if she is feeling much better on steroids and able to eat, perhaps she is healing and the weight gain and growth will come. Then when you get her maintenance plan figured out she hopefully can maintain remission and keep eating etc. So maybe just maybe you could talk about the g tube surgery but not quite commit to it yet?

I might be forgetting something. Maybe I will go back and reread things.

Glad you got in to Cincy. We are always anxious. We want answers but we don't want answers. There is something a teeny tiny bit comforting about the unknown. Let's us stick our heads in the sand. Answers yank it out. Hope they yank gently.
12-14-2017, 07:50 PM   #58
my little penguin
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Definitely push back on Cincy and the flex sig useless for Crohns
You need a full upper/lower colonoscopy
We went there for second opinion
When was your last scopes /imaging
We just sent images on cd and biopsy slides
But he just had them done a few weeks to months prior to the visit
Are you going to the ibd clinic ???

Definitely get your Dh on the same page for the g tube prior to meeting with docs

Since you donít really have a maintenance med g tube makes sense especially since she is resistant to the ng tube and refuses to drink it

Granted high dose slate roofs help but with a maintenance med (tacro canít be used long term )
Your stick till she gets one

Has she gotten approval for Stelara yet ???

GI wise it worked faster for ds
Than arthritis wise
But we kept his GI stuff in check with formula

Fingers and toes crossed for you
Second opinions are nerve wracking

Pm if you want specifics about cchmc
12-14-2017, 08:01 PM   #59
Maya142
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Remember that Stelara takes a full six months to work and could take longer. If she was willing to use the NG tube, then maybe you could consider waiting. But since she isn't, a G tube makes a lot of sense. She needs calories for growth and development - has she hit puberty yet? I know you said she is very small. Calories that are easily absorbed, since she isn't in remission and hasn't really every been in remission, will be easiest on her gut.

Also, NG tubes aren't really meant to be used long-term. They can cause sinus issues and scar tissue in the nose and are really meant to be short-term.

A G-tube is also psychologically much easier on the kiddo. It's a pretty simple surgery, only a day or two in the hospital usually. If you have any questions after meeting the surgeon, let us know!

And while high doses of steroids work wonderfully, believe me, you do not want the side effects that come with long-term steroids. My daughter is dealing with low bone density, Cushing's syndrome and adrenal insufficiency (which can be life threatening) due to being on steroids for years for her arthritis.
12-14-2017, 08:17 PM   #60
crohnsinct
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OK I forgot you are looking at Stelara. Yeah, 6 months of steroids is not a good option but I wonder how much of an option 6 months of formula only to control disease might be for her. Hello rock, hello hard place. She is on three drugs and no control without steroids? UGH! Is she on board with g tube? If so and if she is anything like my daughter's she can get her daddy to see the light.

Did they consider Remicade?
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