So my kiddo was VERY against the NG tube at first. She tried very hard to drink formula (Peptamen Jr) but could not drink enough to maintain her weight, much less gain any. She was severely underweight and malnourished by that point, so her GI insisted on an NG tube.
Because M was so underweight, she was admitted to the hospital. The first night the nurse placed the NG tube. She was not happy. It was uncomfortable and her nose and throat were sore.
The second night was better - she placed the tube by herself and her throat was less sore! By the third night, she did it easily. Within a week, it took about 10 seconds. She just placed it before bed, did overnight feeds and then pulled it out before school. It was surprisingly easy and not as intimidating as we thought it would be.
She was in high school and very clear that she did not want to have the tube in all the time. Apart from the first few days, which were tough because she was uncomfortable, it was not bad at all.
They had to admit her to monitor for Refeeding Syndrome, but if your kiddo isn't very underweight or malnourished, they can teach you to do it in an outpatient appt.
Later she developed Gastroparesis and had to switch to an NJ tube. That goes all the way into the jejunum, so cannot be placed nightly. It has to be placed by an interventional radiologist, so once it's in, it stays in.
She was not a fan of the NJ tube. By then she had lost even more weight, but boy, she fought it. She was SO stubborn and eventually got down to 80 lbs, a total of 25 lbs down from her normal weight. Her GI insisted on the NJ tube, but M had turned 18, so she really, really resisted. She was admitted multiple times for her weight and finally, after M was told her organs could fail if she didn't gain weight (she had already developed Refeeding Syndrome and an arrhythmia), she agreed.
She had that for 3 months and went to school with it. She did get a lot of questions but she dealt with it, with the help of her psychologist. Kids weren't mean - she wasn't teased or anything - but they were curious. And she was very self-conscious with it.
But it did work wonders!! She gained all the weight back and then some and she went from being so exhausted and malnourished to being a normal teenager! She had been stuck in bed all day because she was so weak - all that changed once she was getting good nutrition.
Eventually we switched to a GJ tube - surgically placed - which is much less noticeable (you'd never know it was there, unless she showed it to you). Some kids with Crohn's do have G tubes, but generally an NG tube is tried first and if it's clear the kiddo will need tube feeds for a long time, then a G tube would be placed. It's not a difficult surgery, but it is a surgery.
My daughter would say that the NG tube wasn't bad at all. It's a teeny-tiny tube - they give them the infant size (6Fr) and it's like spaghetti - soft and flexible. She inserted it while drinking water, so it went right down. Once you get the hang of it, it's quite easy.
She much preferred being able to insert the NG tube every night vs. leaving the NJ tube in. Many teens, even ones your daughter's age, are able to insert the tubes themselves.
It did help a lot that she was seeing a psychologist, who helped her deal with all this. She was very anxious about the tube (well, all the tubes she's had) and it was an adjustment. She was especially nervous about going to school with the NJ tube, but honestly, it wasn't so bad once she got used to it.
The other option, of course, is to drink the formula. Some kids are able to do it, others are not.
My daughter now says that the NG tube was WAY better than trying to drink the formula. It was much easier for her to deal with.
I will tag some other parents whose kiddos have used EEN or EN: Clash, pdx, Tesscorm, my little penguin, crohnsinct, Kimmidwife
She is still able to eat lunch & dinner. We are trying to get the time down so it can be finished in the mornings when she starts school next week. Anyone have any tips on how to handle school and the tube--I told her that people would probably be curious but that there will also be some mean ones. She is so tough & such a trooper!! I am so very proud of her. :kiss:
