NG tube assistance

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coolbeans

coolbeans

Joined
Jan 13, 2017
Messages
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I need to vent b/c I am losing it over here. My 13 yo d has an ng tube that isn't removed unless she gets sick & it comes out that way. This time she adamantly refuses to put it back in. We have tried talking, bribery, reasoning & it's not cutting it. Short of hog tying her & making it happen ( which I really don't want to do) what can I do? Do I just sit back & let her get back in the shape she was in before (56lbs & 2 week hospital stay)? I know it's working (20lb weight gain plus some height) so I hate to just give up. I am stressed over this & so is she.
 
Does she have a psychologist?
If so call asap
If not call the GI office they should have one in staff for her to chat with
Is the GI adamant she use the tube ?
If I would strongly suggest she call /explain why she won't put in the tube to her GI
Why she knows more than the GI
Does she not want it at school?
Can she put it in over night and pull it innthe morning ?
So no school issues
Honestly I could see not wanting it on your face
Being a teen is hard
Having a chronic illness is hard
Having an ng tube stuck to your face as a teen where kids can mean ...
so ask what about it bothers her
What she can tolerate about and can't
Is it long term or just to put on weight
Can she drink orally the same amount
She may be motivated to try more now


Ds was when it was neocate jr
Did not want a tube
So he half gagged on neocate jr
Until he could drink it
Did 64 oz a day for a while
Now only drinks 32 oz

Good luck
 
She sees a therapist locally but not sure if it's helping-- her GI office is 2 hours away.
GI suggested tube for growth so she wouldn't miss the puberty window
School stinks--she says she has no friends & no one talks to her. Kids are so mean.
She won't even try to insert--says it's too hard & it hurts.
She has zero tolerance gag & wont drink it.
 
My daughter had the same issues - she absolutely REFUSED an NJ tube (which goes further in than an NG tube - to the jejunum, the small bowel, so has to be placed by interventional radiology). An NJ tube has to stay in all the time and she HATED it. It was uncomfortable and she did not want to go to high school with it.

She fought it and fought it and got down to 82 lbs - about a 25 lb weight loss. She was so underweight, we were told her organs could start failing if she lost anymore.

She was basically unable to do anything - forget school, she was pretty much in bed all day.

She developed Refeeding Syndrome (which can cause fatal arrhythmias) and electrolyte issues that lasted for months.

She was seeing a psychologist and eventually she understood that she was very severely malnourished and there was no way she was going to be able to gain weight without the tube. Her psychologist was a huge help with getting her to accept the tube.

Hearing and understanding how serious being malnourished can be was also a wake up call - when she heard from multiple doctors how it could affect her organs, she agreed to the tube.

Her GI also insisted she needed the tube, but that seemed to backfire at the time, the more she insisted, the more stubborn M got. M was 18 at the time, so all the decisions were hers to make.

I would definitely see if there is a psychologist your GI recommends. And I would ask the GI to talk to her and explain why she needs it.

Since she has an NG tube, I would also see if she'd be willing to insert it every night. My daughter did not mind the NG tube because she could insert it every night and pull it out in the morning. It was thinner than the NJ tube and more comfortable, and best of all, no one at school had to know.

It was MUCH easier than she expected it to be. She could do it in seconds within a week.

Her GI did not really give her a choice - the choice was either drinking the shakes, which she tried and could not do, or a feeding tube. It was like medication - not something she got to negotiate with.

Of course, all that changed when she turned 18 and could negotiate everything ;) but you have a few years before that happens!

I would try to find out WHY she hates the tube and then figure out how to help her deal with it. We may have suggestions...
 
Few things - what size tube does she have? She should have a 6Fr - which is tiny and thin and flexible like spaghetti. That should not hurt being inserted. The first night when the nurse did it, my daughter also thought it hurt - a LOT. She was NOT happy. Her nose was sore and her throat was sore.

But the second night, she did it herself and it wasn't so bad. Every day, it got a little easier.

She also learned over time that it was easier for her to use her left nostril vs. the right. We later learned that this is common because many people have a deviated septum. She mostly used the left side after that.

So she should try the other side if she's only tried one side. Also use plenty of lubricant and have her drink water as it goes down. It should slide right down.

There are lots of videos on Youtube that she can watch. I promise once she has done it for a few days, it won't seem so bad.

As for a psychologist - we travel to our children's hospital to see one. My daughter tried two local ones without much luck. Her psychologist, who she has been seeing for 5 years now, specializes in kids with chronic illnesses and works in the GI dept. It made all the difference.

She may not need to even see a specialized psychologist long-term, it could just be a few sessions. It's about an hour and a half for us to drive, but it's worth it.
 
thanks mlp & maya142 for replying

she has a 8FR--we started with a 6 but it would come out if she sneezed wrong so we moved up to the 8 & it has worked well.

I have told her that she can take it in & out so she doesn't have to wear it to school but she wont even try--it is so frustrating. she gets something in her head & wont let it go for anything. the last time we had to put it in, we had some friends assist (she had had a tube for 15 months)--R helped a little but she was so proud when it was in--I told her that it would get easier each time but she refuses to even try. I was so upset last night when I posted but after reading your comments I felt better, not so alone. My approach tonight is going to be: I will do it if you will & I will wear it too if that will make you feel better--maybe if you cant beat em, join em. And if that don't work, then she is going to drink the formula--bet she will appreciate the tube then. :)

I am definitely going to contact the GI about talking to someone--she goes back for labs Monday so I am hoping they have someone available then. Wish me luck.
 
The 6Fr was MUCH more comfortable for my daughter - and I bet it would be easier to insert too. That might be a trade-off that is worth it - more comfortable tube that might slip out a little easier. If it's not in all the time and she's asleep most of the time it's in, it'll be more likely to come out anyway.

We had maybe one or two times were it came out at night. And it's so easy to insert.

M got so comfortable with inserting that she honestly considers it a cool party trick :lol:. When she was in pediatric pain program (which was inpatient) she wanted inserting an NG tube to be her talent for the talent show! It became so easy for her that it was like second nature.

Eventually we did move to a J tube because it was clear she'd need a tube long-term. That is also something you can discuss with your GI - if it's for the long-term, a G tube is not a bad idea. It is a surgery, but it's a minor surgery. Most kids are only in the hospital a night or two. And once it is in, it's very easy to deal with - you change it once every 3 months at home. And no one has to know it's there - they have very low profile buttons now and you would never know that M has one (actually 2 - she has separate G and a J tubes) unless she showed you.

When she goes to the beach, she wears a tankini and literally no one knows. She MUCH prefers having a tube in her stomach to a tube in her nose. But for her it made a lot of sense because we knew she'd need it for a while.

Again, it's something to talk about and consider especially if your daughter will need tube feeds for a few years.
 
Also, after my daughter spent three months trying to drink the formula, she REALLY appreciated the tube!! She says she will never ever go back to drink formula - especially elemental formula (Neocate) which is just nasty.

If she does want to try drinking it, cold formula is easier to drink and some kids find that drinking out of a cup with a lid (so they can't smell it) and with a straw helps. Generally Boost and Ensure are considered the most palatable but also the hardest to digest. Then come semi elemental formulas like Peptamen Jr and Pediasure Peptide, which some kids are able to drink.

Finally elemental formulas which are easiest to digest but VERY tough for older kids to drink - according to my daughter, they taste disgusting (I believe she said that Neocate unflavored tastes and smells like feet ;)!!).
 
I think we still have some 6Fr laying around so we may try that if it would make her more comfortable.

She cant do the Peptamen but she has been getting the Neocate thru the tube & it really stinks when mixing it up. I don't believe she will be able to do it but we shall see.

I spoke to the GI office & they have a coping clinic for patients but appts are limited, of course. They were going to check & get her one scheduled. Fingers crossed it will be soon.
 
Glad you made some progress!! Please tell her that my daughter had a BAD first night - said it hurt and her nose hurt and her throat hurt and she hated it but within a few days it got much easier.

I bet if you can convince her to try it for two weeks, she'd be on board by the end of the two weeks.

For the NJ tube, which had to stay in, we bribed. It's not something we usually do, but she was so underweight and so sick and so miserable and we were so desperate to get her to cooperate.

Anyway, she ended up with a kitten at the end of the 3 months with the NJ tube!
 
Our GI let Ds taste every kind of formula
Neocate jr vanilla or unflavored were not worth it per Ds
They tasted horrid
He is ok with the chocolate
Almost got sick on the "tropical" version

Eo28 splash are elemental but taste better per most kids
They come ready to drink in a juice box


Some kids prefer elecare jr vanilla
Ds hated it as well

Very cold with a lid and straw
Always a straw
 
We made Neocate as cold as possible - tried chocolate, vanilla and unflavored with chocolate and strawberry syrup. We tried Elecare Jr vanilla and Neocate pudding. She hated them all. We even made Neocate slushies by adding crushed ice, and that helped a little because it was so cold that she couldn't taste it as much.

She tried one of the EO28 "juice boxes" but could not get it down.

She was able to get a little bit of the chocolate Neocate Jr down, but nowhere near enough to maintain weight, much less gain.

Getting her to drink them was so painful - for both me and her. But she was trying her hardest not to need the tube, so we stuck with it for several months. But in that time she got sicker and sicker and lost more and more weight.

In hindsight, we shouldn't have waited that long, but it was a tough situation because she had turned 18. I didn't know how serious being malnourished was and neither did M - I feel like if she had understood the consequences better, then she would have cooperated earlier.

I'll tag some more parents who have kids with tubes - Tesscorm, pdx, Clash, Farmwife, Kimmidwife

Good luck and fingers crossed for your girl!
 
Hallelujah it's in & she did it herself!!!!!! However, I put one in first & let me tell you, it is some weird sensations going on. I feel like this will be the best Thanksgiving diet aid ever!!!!!!!!!!! Hey whatever it takes sometimes.
 
Way to go!! Tell your DD that we are so impressed :dance:!!

And kudos to you for doing it with her - what a great idea!

It does feel weird according to my daughter - not painful, but the sensation takes some getting used to. But once she gets used to it, she won't even really notice it.

Did she try the 6Fr or did she stick with 8Fr?
 
What great news! I'm super impressed by both of you! Do you think she'll take it out every day now, or does she still want to leave it in all the time?
 
We only had the 8F here so that's what we went with. I am going to highly suggest she take it out& put it back in at night b/ c I think that wearing it to school is what bothers her the most. Now that she has actually done it herself, maybe it won't be such a big deal. Idk how long I am stuck with it--ha!! The things we do for our children. I hope you all have a blessed Thanksgiving.
 
My daughter thinks you are the coolest mom ever for doing it with your kiddo!!

I hope she will start inserting it and pulling it out in the morning- honestly, it is so much easier socially. My daughter was also really self-conscious about having the tube in all the time, and that was as a senior in high school. I'm sure it's much worse in middle school.

Fingers and toes crossed!!
 
That is so sweet of her to say. It has really given me a new appreciation for what these children go thru. They are very brave & I admire them so much for all these horrid diseases put them thru.
 
Sorry late again!

I second the coolest mom ever! I don't know if I could even stomach it.

Grace had her ng tube for 6 months but it started messing with her sinuses.
And seeing as it would be a long term issue we went with a g-tube.
Best decision ever.
Now, 5 years later, we're so glad we opted for one.
 
Sorry I'm so late to this! But glad you've gotten through the worst of it (hopefully!).

I second all that was said above! 6fr is much easier to insert. My son inserted and removed his tube every night for approx two years. And, as Maya said, it became a 'party trick' - when his friends slept over, they'd want to watch him do it! (boys... :facepalm:) It truly did become second nature to him, he'd insert the tube in seconds.

And, I am in awe of you! Wow!!! You're a great mom for doing it with her! :awe:

I hope she's decided to try to insert/remove each day... I can't imagine how hard it would be to be a teen and need to wear the tube every day. While using the tube may be not avoidable, not needing to wear it during the day would make it easier. :ghug:
 
Ok so today she took hers out after meds this am; however I get to keep mine till we go get labs Monday then this bad boy is coming out in the parking lot!!!!!!!!!!!! She had a friend stay over tonight so she put it back in to show off for her. I get lots of odd looks & stares. I am learning to stare back till they get uncomfortable--idk what is wrong with some people?? Haven't they ever seen a grown woman with a cupcake sticker on her face?? We are going to see Christmas ice sculptures tomorrow so I will let you know how the ogling goes. Haha!!!
 
My daughter hated the staring too. People really do stare!! But she did also get some special treatment - there was one bakery that knew she was trying to gain weight because the owner asked about the tube. After that, she gave M free cookies!!

She used the stickers too but only certain ones - the cupcake was considered too babyish ;).

So glad she is doing better with inserting the tube. If you ask your DME about 6Fr tubes, I bet they could get you some. As long as you tape them well, they don't come out at night - at least, that was our experience.
 
I don't recall the tube ever coming out accidentally at night with S?? He did use tape to attach tube to cheek area and then looped the ng tube over his ear. We'd then use a medium sized hair clip to loosely hook the tube to his t-shirt (around front of shoulder area).

I think they only problem we had at night was the NG tube disconnecting from the pump, and then continuing to pump the formula onto bed/floor while S was sleeping. Very messy!! :eek:
 
I think my daughter only had it come out once or at the most twice. I know it was with the NJ tube because we had to go in to interventional radiology and get it replaced.

We would just tuck the tube behind my daughter's ear after taping it to her cheek with two layers of tape. We used Hypafix tape and the Feedie Friends stickers.

We also had several times where the tube became disconnected from the feed bag and so the pump fed the bed/M's hair. Like Tess said, very gross and messy!! There are clamps to prevent that from happening though, if it happens a lot. Also, there are new EnFit connectors that are being rolled out that will screw together and shouldn't come out as easily (you may already have them depending on where you are, we haven't gotten any yet).
 
She let me take it out yesterday morning before we went out---I have a permanent indention in my face & not a hair left on my cheek. I may be the bearded lady (on one side) when this is all said & done--haha!!

We had labs done this am & she was so excited to tell the nurse what we had done & show her pics.

thanks for all the comments & support--I am glad I was able to at least walk a little in that part of her world.
 
Surprise surprise she won't even try to put the tube back in. I am so mad 😡. We have a dr appt tomorrow so we will be discussing our other options. I hope they can get thru to her b/c I have about had it.
 
Would she consider trying it with a thinner tube? The 6Fr? My daughter found it much more comfortable.

If she's going to need it for a while, I would seriously consider a G tube. It is a surgery, but it is not too bad. It's often done by an interventional radiologist. Usually 24-48 hours in the hospital, sometimes a bit more. The first week was tough, but after that it got easier. My daughter went away to college 2 weeks after the surgery and she was mostly recovered.

It was VERY worth it for my daughter. Having a tube in her stomach is SO much easier than having one in her nose. Plus, no one has to know at all, so it's socially much easier.
 
i think the g tube may be the route we have to take. I plan on approaching it tomorrow with the GI & get her opinion. We are on no maintenance meds right now & she has been home sick for the last three days with what may be the start of a flare. We are supposed to be getting a second opinion in Cincinnati as to how we need to proceed. Stelara has been mentioned & also a redirective surgery?? That would allow her gut to rest. However they can't get us in up there till feb!!! I am feeling very anxious. Prayers appreciated.
 
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
 
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.
 
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?
 
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. 🙁
 
Oh, I remember now. Tacro is a pretty strong med - usually used to prepare for surgery.

Hope she is feeling better today.
 
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?
 
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!!
 
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!
 
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 doesn’t burn
 
Maya142 said:
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!
Click to expand...

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!!
 
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 it’s life threatening
 
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.
 
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.
 
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 “in charge” in his mind at least
And he can make more informed decisions

Still working on that with GI
Old habits
 
crohnsinct said:
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.
Click to expand...

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. :shifty:
 
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.
 
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 it’s not being stubborn it’s a true mental thing
Recommend the book “talking back to OCD”


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
 
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.
 
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. :(
 
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.
 
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.
 
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.
 
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!!
 
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!!!
 
^ 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.
 
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 don’t 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 can’t 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
 
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.
 
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?
 
I believe she has tried and failed both Humira and Remicade due to antibodies CIC.
 
grr. I thought just Humira. Where did I put those darned reading glasses?:sign0085:

No joke, I have like 6 pairs and when I dropped of my high schooler she said, "make sure you do your brain games mom".

We wouldn't be so senile if it weren't for them!
 
She had both the upper and lower scopes done when she was hospitalized in August. I don't understand why they would need more scopes since those were fairly recent. I think the dr we are seeing is Densen?? Anyone familiar with him? I told hubby what you all advised about the flex sig & he is on board with refusing that.

I also talked to him about why the G tube is important--stating the risks of ongoing steroid use & how meds & pre procedure meds would be easier with that along with the benefits of formula for growth & nutrition. I told him he could read your posts & learn more. I will make them available so he can get educated before we go. I think he is nervous b/c it is still a surgery & that worries him.

We haven't heard anything about the stelara--I will check on the status tomorrow. CIC--she has been on remicade & Humira but developed antibodies to both unfortunately. 😥


We also meet with colorectal surgery in Cincy-- is that normal? I wish I could be an ostrich with my head in the sand & stay blissfully ignorant.
 
We haven't met a colorectal surgeon at second opinion appts. but I think if they are seriously considering surgery for your kiddo, then it is probably important.

For scopes, all doctors like to "see" for themselves how much inflammation there and how much scarring/damage there is.

For G tubes - any questions you or your husband or even your daughter has, let us know! M can tell your daughter what the surgery felt like - the worst part etc. There are a few teenagers on here who have had it more recently - Kimmidwife's daughter and Clash's son - and they can probably tell you more accurate info.

I always figure formula can't hurt and if you have a kid with severe disease, it can only help. If you do EEN it could induce remission, and if you do supplemental EN it will still help with growth and gaining weight and development. It also really helped my daughter just feel a whole lot better - being malnourished just makes you feel crummy.

When you're at Cincy, any chance you can see a psychologist who specializes in GI kids there?
 
ok this is probably a dumb question but how do I word the e-mail to Cincy & tell them I don't want the flex sig? Just explain that we just had scopes done in August?? Or just ask them to change it to scopes? I was telling hubby about it last night & he doesn't want her to have to go thru all that again unless it is absolutely necessary.

I don't know about seeing a psychologist but I guess it doesn't hurt to ask.
 
Ask if they are necessary, given she had scopes in August. And say that if they are necessary, you would prefer that they did a full colonoscopy because at her last scopes she had disease in her terminal ileum/cecum or her whole colon (I can't remember which one is true for your kiddo).

Sometimes it helps to phrase it as a question instead of a demand. You could just ask why a flex sig vs. colonoscopy considering they are putting her out anyway for the endoscopy AND she has had inflammation in her terminal ileum before.

You can even saying something like "Considering my daughter had inflammation in her TI in August, would a flex sig really be useful? Doesn't a full colonoscopy make more sense, given that we were sedating her anyway?"

Generally the advantage of a flex sig is that the prep is "easier" - enemas usually and no liquid diet necessary (not sure if enemas are easier for kids, which is why I put it in quotes) and no sedation required (but again, for kids it is done with sedation, as far as I know). So basically, there is no real advantage to a flex sig.
 
thanks Maya142--you are so very helpful. :)
as of right now, they have her scheduled for an MRE the first day, flex sig the next & an endocrinology appt, gastroenterology appt & colorectal surgery appt the last day. I appreciate them being thorough but hate for her to have to go thru a repeat of tests she had recently; plus who knows when they will schedule the G tube & if the Stelara will ever get approved. That is what I am going to ask Santa for for Christmas--all I want is to get some Stelara for my baby. I am rambling......;)
 
this is the response that I am getting from Cincy when I asked if the sig flex is necessary since she had scopes in August.
[FONT=&quot]"This test [/FONT][FONT=&quot]is to do a viral PCR for CMV that was not done at Vanderbilt, so it would be a new test. If you need clarification or more information I am happy to have a nurse give you a call." [/FONT]
[FONT=&quot]Now what? [/FONT]
 
Definitely have the nurse call you
They can check for cmv
Most do nasal swabs or swabs of ulcers
I guess innher case ulcers in the sigmoid colon
But still i would wantbto know more

But if it’s infection they are concerned with
Why steriods and tacro ?
Someone isn’t saying something
That’s very weird
 
This is part of her itinerary for our upcoming second opinion visit to Cincinnati in late January. We haven't seen a infectious disease dr since she was first dx'd in 2016.
 
I would talk to the nurse and lay out your concerns - a flex sig won't look at her whole colon or TI and she has disease there. And if you're going to put her out anyway, why not just do a proper colonscopy and get a good look at everything?

I would also find out more about the CMV test and why they're doing it.
 
I know others who they thought had super bugs including cmv
So they cultured the ulcers
But those were in the mouth
The results were negative btw

At one point GI looked at cmv for ds
Again negative but never pcr on colonic tissue
 

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