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

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Seashell
My d was admitted to hospital and is only taking food through ng. She’s going to an IP next week so I will have limited contact. I’m really scared obviously - about IP, that she won’t eat for months, that she’ll get worse there - that we haven’t any choice about where she goes (NHS Uk) all the usual so my question is...

...what made your children start to eat again? Time? weight gain? I know it’s different for everyone but I would love your stories.

I spend most nights reading these threads. Thx to all. Such a life saver.
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yellowcaty
Hi Seashell

I’m really sorry that she is in hospital. I have no experience of ng tubes, so I can’t be much help. Just wanted to say you are not alone and to send you some hugs and strength. Do you know which IP unit she is going to?

Xx
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mid73
I’m sorry I don’t have any experience of ng tubes but eating generally in my experience got easier for my daughter with weight gain and lots and lots of time at a reasonable weight. We also used fluoxetine after WR and I’m certain that helped
a lot too with low mood and anxiety around eating. I hope you get an IP bed not too far from home. And you start to see some improvements.

Best Wishes
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Oct18
Hi Seashell, my D is 20 and has been IP for 5 months and was on ng for over 2 months and the thing that got her eating was the realisation that she couldn’t come home unless she could eat. She is eating now and has leave from hospital and I try to make sure home is vastly better than the ward to keep her going
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ValentinaGermania
I have no own experience with NG tube and hope some others will give you better advice soon.

As much as I know about it is that it is important to stay in contact with "normal" food. So even if she does not eat it present some safe food everyday and let her at least smell it and lick at a teaspoon. You can start with a tiny baby glas for example. Then it will be important that she does not forget how to swallow and how normal food tastes so the next step after licking at the teaspoon would be to get her to eat one teaspoon, then two and so on. NG feeding should always be step two after presenting normal food. The target must be to get rid of that tube as soon as possible. Step for step, meal for meal increase normal food so they can cut back tube feeding.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Enn

Seashell, 

 I know this is quite frightening. However, I really feel for your situation that maybe IP is a good start to getting the weight on and recovery started. 

Ng, tubes are used as a means to get the calories in and many here have had them and it is not forever. It is a means to gain the weight and then with weight the brain's function improves and then the oral intake happens and then that even gets better. It does take time,that is for sure. I would hope that they will try to introduce oral feeds when medically appropriate. They cannot send her home with an NG, and so they will have to feed her orally and get that going at some point. As your D was refusing many meals(from your previous posts) and it was so hard on you as well, I think this is actually a good thing to happen, even though it is so hard to witness. She is getting her "medicine" so to speak and she will hopefully gain. She needs to get both physically and mentally stronger to eat orally and the tube is doing that.
I would suggest you look up ScaredNZDad's thread as there is some information there as well as other threads on NG referenced in the same thread. That may be a good starting point for you. 

I feel that the goal is weight gain first, second and third. How that nutrition gets in right now does not matter. I hope she is gaining with what they are doing. Do you feel you have a good team now and will later on too?
I have been wondering how things have been with you. 
I hope you are taking time while d is in care to take good care of yourself and prepare for her return. 
XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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HopeNZ
Hi Seashell

Our case was a little different, as my d never stopped eating altogether.  When she was admitted to hospital and an NG tube placed, she was still presented with meals and expected to eat.  Sometimes that was only a tiny mouthful or spoonful, but it was enough to keep her familiar with the tastes, smells, textures of food.  Initially almost all her nutrition was via the tube, which just dripped away in the background, and fortisips, the nutrition supplement which accompanied her snacks.  If she had refused a meal, the equivalent in fortisip would have been added to what she was fed via the tube.  I don't know how it works in IP in the UK, but I would hope from a feeding and swallowing point of view your d continues to be offered bolus food first, with the NG as supplemental nutrition.

As an aside, I think having meals presented to her probably helped my d in other ways:  ironically, given the anxiety around ED etc, it broke up the horrifically dull and boring days and weeks of hospitalisation;  was excellent exposure therapy;  made her feel less like a helpless sick person, and more like someone who was in hospital for a while and would be going back to normal life soon.

To answer your question, "...what made your children start to eat again? Time? weight gain?", I think it was probably both these things, and also the fact that she had continued to at least go through the motions of eating orally.

It must be very frustrating for you not knowing where your d will be sent for IP.  Is there any way you can find out more about how things work in general at the centres where she might go?  Can you talk to your team about your concerns, so that when she does transfer, the conversations around eating vs NG tubes are already underway?  I really think information is power.

Thinking of you, Seashell.  
Hope some of this helps.

Warmly
Hope
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Foodsupport_AUS
When my D had NG tubes the reason she ate again was to get the tube out, she found it very uncomfortable. Despite this she was tubed a number of times as she just couldn't eat. Her hospital had a rule that she had to consume all calories orally for three days for the tube to come out, but either way the calories would go in. Often once they have gained enough weight and there is enough brain function returning they can see that it is much better to eat than continue with the tube.
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Sotired
When my d was inpatient at our children’s hospital how it worked was
* they put ng tube in.
* for three days they were ng fed only to restore vital nutrients
*after thst three days they were brought into the dining room with other anorexic patients and trays of food were placed in front of every girl there ( the boy got to eat separately).
*each girl had 30 minutes to eat.initially, they were allowed to just look at the food and attempt if they felt able.after a few days there was more attention given and more persistence at getting the girls to eat.
* most managed to eat and after a week of successful meals could have the tube removed on the proviso that eating and weight gain continued.
If this did not happen the tube got replaced.
So there is a chance thst this could happen where you are. You need to see what the protocol is and ask for a written copy of it.
We were expected to go in and do at least two meals a day with d while she was there.
Hope this helps
Sotired42
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tdm13
Dear Seashell, sorry to hear about this development,

our d stayed for 4 months in a swiss hospital and did not eat at all, only fed through NG. As the staff did not manage to get her to eat and remove the NG tube we decided to take her out succesfully refed her at home using FBT and the great advices in this forum.
We share our story in this and this video.
you can contact us privately as per need.
our love goes out to you
tdm13
___________________________.
parents of d who started to restrict food at 11yrs in Aug2015, diagnosed as AN. Hospital resident mid-Dec to mid-Apr2016 under traditional treatment (isolation+weight contract). Total failure made us  switched successfully to FBT at home. WR in Aug 2016. No more symptoms since Jan 2018, follwoing growth & bmi percentile
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mjkz
My daughter was fed both inpatient and outpatient with NG to keep her alive.  One thing I always insisted on was that she try food at each and every meal even if it meant sitting there while I ate.  You are so early in the process that I want to say don't worry but you're a parent so you're going to worry.  My daughter got rid of the tube for a variety of reasons:
-it was uncomfortable
-people stared at her with it
-she couldn't sleep without getting tangled up in it.
-it kept coming out and putting it back in was a chore
-she started eating enough not to need it
-her mood lifted and with weight gain it was no longer "attractive" in the sick way things like that can be attractive.

Etc.  One thing every inpatient program my daughter was ever in did was work to get her off Ng so hopefully that will be your experience too.
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hope21
We are uk based (Scotland) my D was also NG fed as she stopped eating she was also sectioned so the tube could be put in as she refused consent. She pulled it out twice. (Age 12).
It was all very traumatic for her at the time. And they said you will die if you don’t eat, your organs are failing and she had heart problems (debating sending to cardiac unit) heart monitored twice a day.
She was NG fed for two days (no solids given and fed on own) , hated it, uncomfortable. Then presented food with others. If didn’t eat tube fed. Had to eat for three consecutive days of all meals and snacks before tube was taken out. The tube was in a week.
It was an awful time but saved her life. It’s not been easy and still not perfect but it helped her and she hasn’t looked back since then. She was sure scared and frightened but started to fight back.
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