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

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Determinedfamily
My D is in Denver Acute prior to moving to ERC. She is in a terrible state.
Her newest complication is that her stomach was not emptying, and the folks there thought it was a behavior issue when she was unable to eat. After x-rays and CT scans they determined that she had gastric dilatation (sp?). There was fear that her stomach was so engorged that they were afraid of rupture. She had to have a NG tube in to drain of the fluid and since there was blood in the drainage, they did an endoscopy to see why. They determined that it was due to capillaries breaking because of the engorgement of her stomach.
You can probably see where this is leading...Now she is refusing to take solid foods in fear of this repeating. There was a lot of pain involved and since no one initially believed that there was a physiologic reason for refusing food, she now wants to 'take charge' of her intake. That basically means very little food.
Since she is an adult, we are not able to get much info from her or her docs (thank you HIPAA).
The info we did get is that none of the doctors have seen this happen quite like this. Obviously her systems are shutting down, and her anxiety is thru the roof. Does not even want to look at solid food.

Is there anyone out there who has dealt with a similar horror? I feel that her body has just given her another way to justify the no food route. Since there is no logical thought going on here, she won't even consider that her lack of food created the issue in the first place.
Panic doesn't even begin to describe how our family feels right now. She is angry that I won't agree with her. All I can say to her is that now they are aware of the problem, and will watch everything carefully.
Not what she wanted to hear.
Thanks for listening. I am off to see MY therapist now...
determined family
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Red
I am so sorry, determined. I can well understand how much you must be panicking. Is she very underweight? Could you go down the Medical gaurdianship route? Perhaps worth discussing with her doctors. Could she have an agreed number of calories, whether by liquid supplement OR solid food? Sending virtual hugs & support.
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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lizbugsmadUK
Text deleted

Edit, due to concerns from the moderators


On a more positive note, I agree with Red, getting a 'contract' in place with calories, but there is no reason why initially she can't start back on drinks, they aren't 'solid food' but you can live off the likes of ensure with the right supplements added. Aim for three a day initially and then get something in for snack, then you can gradually aim at introducing soups and shakes etc... Thinking of you, what an awful situation to have been put into.
The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind. ~G.K. Chesterton
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gobsmacked_US

I'm so sorry determinedfamily.

I see this as somewhat similar to what we've seen here with food phobias. Awful that it's on top of everything else. I'm guessing people in Denver will have some ideas. You might take a look at the Kartini website, too, as they deal with food phobias quite a bit.

Lizbugsmad -- I'm not a medical person at all, so I need your help in understanding where you see medical neglect in this?

 

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trusttheprocessUSA
I am so sorry for your daughter's suffering and your terror. I am also sorry your D's real biological issue was attributed to ED and willful behavior. Does she have an NG tube? Can she get her "meals" via the tube?

When my son was critical and stopped eating all together he had round the clock Boost+ for his intake. Along with 5mg of Zyprexa until he could eat food.

I am thinking of you ans sending warm support.

Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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IrishUp
I would just like to interject here that it is impossible for strangers on the internet - even caring and concerned ones trying to support each other - to play the role of medical consultants. We are not in the position of attending clinicians and do not have access to all the relevant information. Even still, as the saying goes, hindsight is 20/20. An allegation of negligence is serious business.

It can be a fine line between drawing on our own experiences and offering our own opinions into overstepping the bounds of our knowledge, abilities, and what is appropriate. Personally, I find it useful to be mindful of "I language" - there is a world of difference between "Oh my goodness, that sounds alarming, I hope that it wasn't due to negligence" and a declarative statement of something we cannot know. Those of us who are involved in the healthcare professions and/or who do have first hand clinical knowledge, need to be especially careful around such boundaries. 


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  • This is an anonymous forum but anything you post will be available to anyone, anywhere, permanently. If you post about specific people, treatment providers, or methods you can assume that the subject will read it.
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IrishUp
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lizbugsmadUK
Thanks Irish for the reminder.

Gobsmacked i see neglect in the fact that blood was in the drainage. To get to that point it doesn't happen over night, take serious distention of the stomach to occur and the pain and discomfort level would have been high. I don't know as determined family haven't said much else but I would imagine that their D would have been complaining of pain, discomfort, etc for some time before investigations happened. Something I could liken it to that you may have experienced is trapped wind/bad bloating - horrible on just a short time scale of a few hours til it shifts.

I know the US systems work differently to the UK system so i wont judge too hard. But bear in mind many if us as parents an carers know our children complain of stomach ache when/after eating, imagine having that sort of sensation most of the time and then being told that the people who could help didn't believe you? I know we have to play the game of work out what is and isn't ED, but as a rule in the medical world if you have more than a few days of the same common complaints coming up regularly you start to look into it.
The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind. ~G.K. Chesterton
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Cherryusa
determined,

How scary ! We had some very difficult times with our d's gi function . I was afraid of what your d is going through. I don't have advice and I am not a physician. Raining awareness of the complications that can occur during refeeding is important here. Though uncommon they are real and can be life threatening . It goes to show how important it is to have anyone with ed properly evaluated and monitored if gi symptoms increase or bowel movements are absent. Our d required a medication to increase gastric motility for a while when food alone , stool softener and other medications 'weren't enough to do the trick. I am sorry and hope your d's treatment team can make a plan to get nutrition safely going in again. Of course your d doesn't want to eat, she has an ed! Thinking of you and hoping things improve soon.
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