This is true and a good point, but that does bring me back to the point where when faced with the idea of giving up something dietarily to solve a health problem, many people will not even give it a trial to see what happens. “Oh, I could never give up ____.”
Doesn’t surprise me at all. My experience and research over those years bears this out.
Her nutritional status at dx was severe BUT he/I liked to keep the tube feeds even after it stabilized. She was on them uninterruptedly from age 10-18 when she went out of state to uni.
Liquid feeds longterm is a common tx for pedi cases in the UK, CA and Japan; uncommon in USA. The premise behind the longterm use is multifaceted; but its efficacy undisputed. Growth stunting, delayed pubertal development and general -to varying degrees- malnutrition/undernutrition secondary to malabsorption/motility issues are ubiquitous in the pedi pt population.
When we left his service at age 18 -he’d been her doc for the whole 8 years- he said he believed had she not been on the feeds she’d have “had surgery years ago”.
Now 21, 3rd year at uni, she did end up with a resection Jan 2019, took all the TI and the cecum. Now on Entyvio. Has been through every other drug available yet disease remains active. Hers is/has been a bad case/course.
She has never been keto, she eats what she can keep down which varies with the day. Her motility has always been a factor and remains so. HOWEVER, when on tube feeds she had vastly improved motility and was able to eat normally (she was allowed any and all food in addition to the nightly 1200 cals of liquid feed).
I’m sorry she’s had to have surgery. I hope she can find some relief.
NG tubes are brutal. So proud of her being able to put them in and take them out herself daily. You’re a great Mama! Can only imagine what you’ve been through! Same kid is deaf and wears bilateral cochlear implant. Yes, parent support is critical especially when young.
They are so not, though! Insertion took maybe 10 seconds, 10 actual seconds. If you counted “one Mississippi” maybe 5 actual seconds. Removal, 1 second. Utterly painless. NO gagging. Not exaggerating. If one uses the correct size and technique it’s nothing, and actually far easier to do on oneself than have done.
I’m not, I loathed having a sick kid. Some Mothers have the caregiver personality, I don’t.
What I went through was no bigs; for her though it was/is kinda hellish.
Wow, this is horrid. I think you were probably better then you are giving yourself credit for, @BlueViolet
Is this your daughter that is married with kids? or the youngest one? I am sure that it is all very difficult still for her. You raised 4 kids and they all still love you and still speak to you, so you are too hard on yourself I think. I think you are an awesome lady, personally =).
Aw Susan your kind heart slays me.
Nah I speak the righteous truth always. Those who know me IRL know my praise is valid due to how harsh and accurate is my criticism
It’s the 21 y/o, the former favorite (now surpassed by no.4) I’ve spoken of, no.3.
Ya it is difficult no doubt; just last night talking on phone to no.2, she told me no. 3 has now failed Entyvio and is going to start Stelara. Still working p/t and f/t uni though, lives with her BF.
I hope that her boyfriend is supportive and helpful as well. It must be hard working and being in University with all that as well.
Wow. One of ours had over 40 NG tubes from 3 to 9 months. His were for reflux (& heart failure) so bad he had failure to thrive. His poor esophagus was so irritated that he developed an aversion to food by mouth. Swallowing hurt him so.
You and your daughter remain rock stars in my book! Y’all are strong women!
The reflux was likely why his esophageal inflammation. NGs -you prob know- have the texture of limp spaghetti and the ones we used were infant sized, just a tad bigger than a piece of spaghetti as well. Painless. Once in they are hardly felt. Of course insertion on a wee baby is gonna be sad and traumatic, since no way to explain to them wth you’re doing.