Ng tube/methotrexate

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Worried mama

Worried mama

Joined
Sep 16, 2014
Messages
188
So, I think we are going to try the ng tube for supplemental nutrition, along with adding in methotrexate. (Currently on remicade which is not working by itself).

So, please tell me what I should ask the dr about with these two things, he's calling us tonight to get started.

I'm afraid of the tube. My sons got serious anxiety issues as well and this certainly isn't going to help.

Tell me, type of tube, formula, tips to make it easier? Anything at all that might help.

Thank you!!!!
 
Be prepared insurance may not cover the formula
It needs to go through your Dme clause
It is expensive
Ours covers it but is a rarity any more
Semi elemental or elemental formula takes less healthy intestine to absorb
Have him see medical coping /child life for coping skills for both of you
 
My kiddo has anxiety issues too. She was unable to drink enough formula to gain (or even maintain her weight) so we had to go to the tube.

The first two days were rough, but after that, she was fine. She was underweight enough that she was admitted to start the tube feeds, to make sure she didn't develop "refeeding syndrome." We were in the hospital for three days. The first night the nurse inserted the NG tube, but by the second night, she was able to do it by herself. They teach them to insert it while drinking water so that they don't gag.

It does take some getting used to - the first night her nose and throat were sore - but by the third night she was MUCH better and within a week or two, she got very good at inserting it in like 30 seconds. She liked that she only had to do it at night so that no one at school had to know.

Within a couple weeks, she decided it was WAY better than drinking the formula and says she would never go back to drinking!

She does see a psychologist who works in the GI dept. often with kids with IBD. That helped her cope with the whole thing.

Feeding Tube Awareness is a great site that has a very informative parent guide. They are also videos on Youtube.

We have also done MTX and that really helped. My daughter had side effects with it but MOST kids tolerate it just fine. My older daughter is still on it and doing great.

They are given Zofran if they have bad nausea with it. Folic acid also helped. Most kids take it on the weekend so that they have a day to recover, if they have side effects. Some kids take the pills, others the shots. My girls had fewer side effects on the shots so we did those. The needles are tiny and barely hurt at all. They both learned to do their own shots.

Good luck with whatever you choose!
 
Thank you Maya142. This helps me put my my mind at ease a bit. I wish I could take you all with me to our appointments :)
 
For methotrexate, find out if your doctor recommends oral or injected. If your son is anxious about shots, he will be happier with oral, but if he's got a lot of gut inflammation, your doctor might recommend injected. Ask about folic acid; it's important to take with MTX, and will reduce nausea. My daughter doesn't have much nausea with MTX, but she takes it just before bedtime on Saturday night, and takes a zofran 2 hours before. She sleeps in on Sunday and feels fine when she wakes up.

We don't have experience with injected MTX, but I've heard that the needle is very small and that it's not very painful.

My daughter's first NG tube was in all the time, but when she started supplemental, she was able to put her own tube in easily. The tube was very uncomfortable for her for two days, and then it was fine, so let your son know that it doesn't take long to get used to. Make sure that the tube you use is very small--most kids on this forum use a "6-french" size, which is very thin.

Try to take things one night at a time, and maybe come up with some "incentives" for the first week or so. We used cash and ipad apps to help get through the first, hardest days.

Also, we had to try a few different flow rates and formula types until we found one that didn't make my daughter feel nauseated. Our home health representative was really knowledgeable about that, and helped us find the right combo. My daughter ended up on adult Peptamen 1.5 formula (and we were lucky that insurance covered all our costs for equipment and formula).

Hope it all goes well and helps to get your son healing and growing.
 
Thank you! Our dr recommended the injection. My son HATES needles, but if it works better on his inflammation, he will get used to it. Me thinks some 'incentives' will be necessary in our near future.
 
It's really a small needle and really not too painful. You could try icing before the shot, which might help. You can also try buzzy: https://buzzyhelps.com - both my girls say it works.

Good luck!
 
I agree with Maya about the Buzzy. My daughter also hates shots; she gets very anxious and upset about them. She used the Buzzy with her flu shot and HPV shot last fall, and it worked well for her. She said that she didn't even feel them.
 
That's what my daughter did too, supplemental tube feeding. We had to go through several formulas before we found one that agreed with her. We started with Peptamen Jr 1.5, then Peptamen Jr 1.0 and then finally figured out Neocate worked best for her. It took some trial and error to find a rate she could tolerate. It all seems very intimidating in the beginning but once you get the hang of it, it's really not so bad at all. Let us know if you have any questions!

Sometimes kids are admitted to start the feeds (like my daughter) and sometimes they teach you how to use the NG tube in an outpatient appt. It is a LONG appt. - 3 hours or so, but kids really do learn how to use it that quickly.

If he has trouble with it, I'd ask to see a psychologist at the clinic. M absolutely hated the idea of seeing a psychologist but then got used to it and now asks to go because she says it helps.

This is the site about feeding tubes. It has lots of tips and tricks: http://www.feedingtubeawareness.org
 
I know those links I posted have lots of info but, a couple of small things...

- as for size 6Fr tube. That is what S used; while, apparently, that is the infant size, S was 5'10" and his weight ranged from 125 to 165 lbs while using this size tube.
- not all nostrils are the same! ;) S could only do it in his left nostril. Whenever he tried to use his right, he had lots of trouble. He did exclusive and supplemental for two years, so long term use of one side only didn't cause him any issues.
- the ng tube is supposed to be positioned up and behind your ear, then down across the front of your shoulder (ie as if long hair is pushed behind your ear). I would loosely clip the tube to his t-shirt, just in front of his shoulder. I used a small hair clip which was loose enough to allow tube to move a bit.
- S's formula was Tolerex.

:ghug:
 
No help here, Jack drank the formula for supplemental EN and methotrexate was a nightmare for us but just wanted to say I hope the combo works wonders for him and he is soon feeling fantastic and at a healthy weight, growing and gaining.
 
Hello, I am new here. I am 13 years old and I suffer from Crohn's Disease and I am in recovery. I have suffered from Crohns since 7 but only diagnosed when 10 and finally having minor symptoms at age 13 ( recently stopped having severe symptoms ) So as you can tell it took a long time for me to get well and what I would like to say is that Methotrexate is a horribly medicine. On certain people it can work fine but on others the side effects can be sever, I was recently taken off of it and put on azathioprine (which i was previously on before diagnosed with arthritis ) and Rituximab for me arthritis but also helps with stomach pains. Before being swapped over I was extremely weak, tired, just very lethargic in general such as not being able to get out of bed, struggling to even get up and brush my teeth or sit with my family, i also had agonizing stomach pains, felt nauseous among many other things but now I am back at school, happy and life is good. Infact I made my first whole week at school last week for this first time in many months after being home tutored for a long time. So I personally would suggest avoiding Methotrexate but others would say no it's great it's really a tough to tell how severe the side effects are. Aside from that my personal experience with having a tube is horrible, not going to lie and butter it up, it was one of the worst experiences of my life. I had it taped to my cheek, and when it goes down it's god awful, I became very ill on it, infact so much so they quickly took me off of it half way into it and I felt to so paranoid with it in and kids would stair at me but never comment on it, i felt like a freak. The worst part though is defo it going in, you choke, can't breathe, horrible feeling. I honestly hope this helped you and I really hope your son gets better soon.
 
We don't have any experience with the NG tube, but my son was on MTX injections for 2 yrs. He was able to maintain remission while on it, although did have some mild joint pain from time to time. I would give the injection on Friday night as it did cause nausea. He was able to sleep in on Saturday, and by noon the nausea had worn off. He too, was nervous of needles, and never did fully get comfortable with the injections, although he tolerated them ok. Folic acid was prescribed along with the MTX, as well as an anti-nausea medication. Good luck!
 
We go for mtx training on March 11th and tube training on March 13th.... I'll keep you updated. If it can help my child, I've got to give it a try at this point. Keeping my fingers crossed that it's not too much of a nightmare....
 
Armani, I'm so glad you are doing better now! I hope all stays stable for you for a long, long time - it defintely sounds like you deserve it!

You're absolutely right that meds affect people differently. It's too bad that you had such a terrible time with mtx because it does work so well with some people. (No experience with it, just have heard that it can be successful.) Were you taking mtx by pill or injection? Just curious because there seems to be differents levels of side effects/tolerance for some people. In any case, I hope the aza works well for you!! :)

Just a note on EEN thru NG tube. This, my son did. He did EN exclusively for 6 weeks and then as a supplement for two years, always with an NG tube. As seems to be the case with everything related to IBD, what works for one, doesn't always work for another! :voodoo: But, my son was able to learn how to insert the tube quite easily and it literally took seconds each night (he'd remove every morning). Now, he was older than you so, perhaps, being physically bigger (ie larger nostril, etc.??) makes it easier?? But, one thing that has come up here in the past is the NG tube size!!! Although my son was almost 17, 5'10", 125-160 lbs (over the two years), he always used a size 6Fr - which I've been told is infant size. There have been kids here who have had a difficult time with the tube and it turns out their size was much bigger! I'm sure it's the last thing you'll ever want to try again (because, regardless of tube size, I don't imagine it's ever a nice experience) but, if it is ever necessary again, do question the tube size!

Good luck to you! I hope you continue to do better and better! :D
 
It definitely does depend on the person. My younger daughter had awful side effects with MTX but my older daughter is fine with it! She is still on it and has been on it for years. She gets a little tired with the shot and has some mild nausea, but she doesn't even need Zofran for it.

The NG tube was rough for my daughter for the first two days. When it was first inserted, she was very uncomfortable and her nose was sore. She was also given a tiny, thin tube - 6Fr - which is the size used on infants. It's like a piece of spaghetti in terms of thickness.

We were quite surprised by how quickly she got used to it and how good she got at inserting it by herself. Once she got good at it, it literally took about 30 seconds. She could also only do it on her left side (left nostril) - for whatever reason, inserting it on the right side hurt and she just couldn't get good at it.

Good luck Worried mama. Let us know how your son does!
 
Quick update on tube feeding. Went for training, long but in the end my son was able to get the tube in quickly on the first try (with our help). Last night he did fine too. He says it feels uncomfortable but he fell asleep quickly. Only issue was that pump alarm went off at 6:00, the formula was out, even though we added extra as instructed to by hospital. We will add more tonight and hope to sleep til 6:30.
 
That's great! I remember having similar issues with the pump alarm. The flow rate wasn't that accurate on our pump, so it was hard to know exactly when it was going to run out.

Hope that the tube feels more comfortable for him tonight.
 
If you don't get all the air out of the bag, the pump might alarm when there is very little formula left. It gets "tricked" into thinking there is no formula left if it's pulling air in.

You can always add extra formula, or try and get all the air out of the bag (which can be tricky sometimes!). In the hospital, they have to refill the bag every 4 hours, but most parents just stick an ice pack in the backpack and let the formula sit overnight. We have done that since the beginning and have never had issues. Our GI says it's fine - the four hour rule is just a hospital thing.

The other thing is that the pump alarms when the feed is done. You can turn that alarm off, if you want to. We did for my daughter because we didn't really need to know when the feed was done since we put all her formula in at night and weren't refilling the bag.

If you have the Moog Enteralite Infinity Pump, that info is online.

I will say that M has had a tube and a pump for nearly two years and now she sleeps through ALL the alarms ;) - which is problematic when there is an error that needs to be fixed! I'm getting to the point where I sleep through them too (but luckily, my husband still wakes up).

Glad he did well with it :dance: - I hope it gets even easier!! The first couple days are typically the most uncomfortable, so hopefully it'll be no big deal at all soon.
 

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