F.E.A.S.T's Around The Dinner Table forum

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Youthful_lady990
Hi, my seventeen-year-old D has been an inpatient and had an NG tube for 4 months in order to gain weight. She has had chronic nausea for 5+ years post viral infection.  She had a successful treatment for sibo which decreased her nausea by about 50% but still struggles.  She has been labeled as arfid, but we have concerns she may have an underline dysmotility which has not been tested.  Both she and I would love for her to have an NG tube to maintain her weight during her last two months of high school, while we try to figure out what works to maintain her weight.    If food is medicine, why get her up to a normal weight only to have her immediately start losing as she cannot intake a full 2500 calories.   She needed three cans of resource 2.0 in order to gain the weight and it had to be done at a very slow rate of 130 milliliters per hour.  I did these at night and it was very long and tiring process!   NG doctors are refusing to let her have an NG tube or G-tube to maintain the weight as they say it is part of her eating disorder.   I cannot fathom this!!!  She wants the weight and has always wanted to be at a healthy weight, she just can't get past the nausea and pain.   Please share your thoughts!!
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tina72
That is very hard so say as we are all no doctors here. I do not really understand the question in your headline (maybe due to lack of language on my side).
If there are no GI issues tested and results that proof it, it is possible that the nausea and the fear of pain and the wanting to have that tube are part of ED. Did they already try to get her used to normal food again?
It is important to get back to normal food as tube feeding for a longer time can have bad influence on the GI system (worst outcome is chronical gastroparesis). She forgets to chew and to swallow and the GI system forgets how to digest normal food.
It is also not very good to feed her only in the nights as the body normally does not digest while sleeping and she needs to eat regularly through the whole day to keep her blood sugar level constant. So this is no solution for a longer time.

It is possible that she SAYS she wants to be at a normal healthy weight but her brain still fights that by causing this fear and this nausea. In that case exposure therapy with increasing amounts of normal food would be best way to get back to normal eating.
It is also possible that thinking she might have some unexplored underline dysmortility is part of refusing to accept that she has an ED. Many patients fake to have celiac disease or lactose intolerance or other GI issues to get an excuse to restrict food. Normally these issues can be tested very simple and when they did not find anything that can mean that she does not have other issues than ED (and I read between the lines that her team thinks that).

To be honest, forget those 2 months of high school, that is not important now, she can do all that school stuff later in a healthy state. Health comes first. A kid that needs to be tube fed is not in a state to go to school.
What is the plan of the team? How do they want her to gain weight without tube?

You say she cannot intake 2500 calories (which is on the low side of what our kids here need to eat). What do you think would be possible? It can be worth a try to add normal food in increasing amounts and to drop the tube feeding slowly until it is not needed any more. 2500 is no big number. She needs to learn that it is possible and not harmful to eat that amount again as that will be needed all her life (at least).
Keep feeding. There is light at the end of the tunnel.
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Youthful_lady990
I should have mentioned she has been eating all along. Probably in taking 1500 calories. But it's the last 500 to 1,000 calories you cannot do each day due to nausea.   She's been on ondansetron for 2 and 1/2 years to try to curb her nausea!
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Tali97
Can she eat enough calories if she uses nausea medication? What happens if she pushes through when she is experiencing nausea? If you chill the cans of resource 2.0 will she drink them? Is she on a liquid diet? (most gastroparesis sufferers find that a liquid diet helps with digestion) . Sometimes it helps to just lay out the symptoms of what happens and ask for help in reducing them. You mention she suffers from nausea and pain does she have other symptoms of dysmotility? Is she currently losing weight?  You can ask for a referral to a GI doc and ask them to perform a gastric emptying study. I would ask them if they think that the motility issues will resolve with time.
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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Youthful_lady990
We live in Canada and they sent her to ED after having a colonoscopy and endoscopy.   Main MD refuses to refer her to a GI doc and says her slow motility is due to lack of nutrition.  And if she has slow motility all they can do is prescribe motility drugs which she has already been prescribed....
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tina72
With this low intake a slow motility is totally normal. My d would have had bowel movement once a week in that state. If nothing goes in nothing comes out 🙂.
If they did not find anything with these examinations she needs to eat more although she feels sick. That is normal in refeeding at the start and only gets better by eating and getting used to it again. I would feed her liquid high calorie drinks in small amounts every 30 minutes to avoid nausea.
When they have restricted food for a longer time the whole intestine system shrinks. It is normal to feel full and nauseous after small portions at the start. The intestine system is a muscle and it needs to be trained again to be able to grow.
They all say they cannot eat more, they feel sick and full. That is normal. But when you require to eat more (one bite more than they want to, slowly increasing) the intestine system grows again and the feeling sick stopps normally.
How long does she not eat normal portion sizes?

I would be careful with motility drugs because misuse of laxatives is a big problem with AN...try to add more magnesium and vitamin C, that has same effect (when she eats enough for bowel movement) without negative consequences.
Keep feeding. There is light at the end of the tunnel.
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tina72
I should have mentioned she has been eating all along. Probably in taking 1500 calories. But it's the last 500 to 1,000 calories you cannot do each day due to nausea.   She's been on ondansetron for 2 and 1/2 years to try to curb her nausea!


If nausea meds do not help and there are no results of the examinations it is very probably that the nausea is caused by the brain because of malnutrition and is due to ED. She seem to have prooved that she can eat. Question is what and how much.
You should increase this low daily intake. What does she eat? Drink? Can you feed very small amounts every 15-30 minutes to avoid nausea? Or just go through the nausea or will she vomit up all then?
If you tell us what she eats and drinks we can come up with ideas of high density food with small footprint.
Keep feeding. There is light at the end of the tunnel.
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Youthful_lady990
Thanks for all your comments.   Because my D is AFRID, and does not have the self image issues and presented as pain and nausea, I have not been 100% on board and likely a hinder to recovery.   I used the mantra I found on this site of "Life stops until you Eat" for the first time yesterday and we had a good eating day!   You  are literally lifesavers!!  I'm loving the food and recipe ideas too.   Just got  the benecalorie in the mail today so adding it to her am smoothie!
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tina72
Please be aware that many AN patients do not have self image or body image issues. That is not needed for diagnosing AN.
And in the end, it does not matter at all what kind of ED it is! They ALL need to learn to eat normal again.

It is great that LSUYE helped today! Go on with that. Strict rules, boundaries, no excuses not to eat, that helped here too. Regular food keeps the blood sugar level constant, no negotiation helps them to send the guilt for the need to eat to you and allows them to eat.

Tell her you are in charge, you know what she must eat and you serve all food, she is just required to eat it. And distract her, distraction helped a lot against nausea and tummy pain after eating here. We watched TV the whole day!

You can add a lot of rapeseed oil to fruity smoothies. Put about 400 ml fruit and juice into the blender and then add 50-100 ml rapeseed oil. It does not taste and smell and disappears in the blender. Increase amount of oil slowly every day until you are at 100 ml and you will get 1000 calories extra with 2 glasses of smoothie a day. And it looks healthy and light and is easy to digest!
The brain needs a lot of fat to recover, 30% of her daily intake should be fats.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Welcome from my side as well. If she is eating and you are looking at boosting the calories, maybe give her ensures. My d lived on them for months and it is a complete meal, containing loads of protein and fat. She can sip on them during the day, maybe put them in a drink bottle, which she can take everywhere with her. My d mixed up the flavour to create new ones, for example banana and chocolate, so that my d wouldn't become bored.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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