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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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worriedwarriormum
Hi all, my first post ever.

D was doing well with FBT as an outpatient following her first hospitalisation 6 months ago.  She was almost weight restored but then went backwards until she refused to eat or drink anything.  She has just spent 5 terrible weeks as an inpatient being fed only via the naso gastric tube.  She has been discharged just to see if being at home will somehow create change in this cycle.

We have a way back to IP if she does not eat and she is subject to a treatment order.  I have to say we are so nervous about how to approach her with food that I am just feeling lost.  I really don't want to see another forced hospital admission but there may be no choice.. have just offered her her first meal and she ate nothing.  I was happy at least to see her interacting with her sister in a normal way as whilst an in patient she has refused to see us, her parents and has even not been able to see her sister.  Any suggestions about how to even speak to her?  When I said she needed to come and eat she just sobbed and eventually came downstairs but would not touch the food or drink offered.

She knows that refusing to eat will inevitably lead to another admission.  I should add that she is suicidal ( this was only evident recently)and we are also worried of course about her potential to hurt herself.
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Kookaburra

Hi worriedwarriormum, just a quick word of support until wise posters get on (the time difference between Oz & the rest of the world means you may need to wait a bit).
A good piece of advice one of the moderators told me (she had a “super resister” - her son LOST weight in hospital) is to ask just for one mouthful to be eaten. Then just one more... Each time/meal just one more mouthful than the last time. Also, would drinking be easier - forget trying to get food in? That’s another way others have started weight restoration - purely with ensures or equivalent  

It’s a really horrible illness, sending hugs

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ValentinaGermania
Hi and a very warm welcome from Germany! I am glad that you found us here! Coming off from NG tube is difficult and you normally need professionals support with that.

Here are some ideas:

You might need not only to call her downstairs but insist on sitting at the table with you for every meal and snack. Although she cries. If she cannot come downstairs you can go upstairs with the food. It is needed that she learns that food is not dangerous.

Then you can start to plate her a small portion and just expect her to look at the food. When that works you ask her to just put it to the mouth and lick on it.
If she is not able to hold the fork/spoon you feed her.
Next step is to take the food into her mouth and be allowed to spit it out again, but she can taste it that way.
After that you try to require a swallow. Then another one.

It is a hard and long way to go back to normal food but needed. You need professional help for that.
I hope there are some parents with more experience here around soon.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Welcome to the forum. Sorry that you have to find your way here. 

My D was also one of those who would just stop eating altogether when ED got too strong. 

You don't mention your D's age or where you are - but what is the plan for ongoing follow up from here on in? Discharging someone who has exclusively been NG fed to just try at home is a  bit different, but I would hope there was a clear plan as to where to go from here. 

Allowing her not to eat is not really an option - she needs that nutrition no matter what. Some have found making the guidelines clear helpful - she needs to eat each meal, toilet before hand, no toileting for 1 hour after etc. Those similar rules to what will have been happening when inpatient. Then when sitting down, clear instructions verbal prompts, pick up the fork for her etc.. 
Your D sounds like she is really  struggling with her ED at present. It may be she does need a further admission. 
For my D the thing that broke the cycle was a puppy, there may be something out of hospital that can be used as a motivator to help her try to fight those ED thoughts and start eating again. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
Hello, and welcome.  So sorry you needed to join us here.

I'm a bit confused about the present situation - I understand that she is now at home with the family, but I don't understand if she still has the ng tube in place.  Personally, I would want to keep the tube in for now, while feeding by mouth is re-established, because it may take some time to fully switch over.  Please clarify if the tube is still in because that makes a big difference in the situation.  Thanks. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enn

Your child's ED voice is booming. Have the treatment team given you some guidelines of when to take her back? From what you have written about giving her first meal, it seems as if she just got home today?

If you give us more information, we may be able to brainstorm ideas to help you.
How old is she? 
Some children do absolutely require longer and multiple hospitalizations .
Did they not give any oral foods to d while in hospital? 
Sorry for all the questions, they just help us understand your situation a bit better.
Please pose any questions you have. Many have been in very similar situations as yours and may be able to suggest things that may lead to a solution for you.

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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worriedwarriormum
Thanks so much everyone for your replies and ideas, it is so very much appreciated.
Just to give some more information to complete the picture, D is 15 and was discharged from hospital yesterday without the NG. She did not eat anything by mouth in hospital for the 5 weeks she was there and all nutrition was via the NG.

Medication did not improve the distress and as she cannot currently even take a sip of water. Even the medication was given by NG.

There is a plan as the professionals see the discharge to home as a potential way of breaking the cycle in which she is stuck. If she does not eat or drink for 48 hours then there is a bed booked for her and we have an outpatient appointment tomorrow to review and possibly re-admit following.

We are doing what we can ( H and I) to get her to eat and drink if only a mouthful but it looks as if another admission is going to be needed.

You are absolutely right, this is a terrible disease. Thank you again for the responses, so grateful.
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Torie
The usual advice is to take them to A&E (I think that's the UK equivalent of ER in the US?) if no fluids for 24 hours or no food for 48.  So it would worry me to take her back home after the upcoming appointment if she isn't drinking.  

I don't understand why they removed the tube.  Some here have done tube feeding at home - do you feel that you could manage that?  If so, I would fight for that.  I can't imagine why they think you - just one person - will be able to achieve what they - an entire, TRAINED team - have not been able to achieve (initiating nutrition by mouth). 

What seems most logical to me is that the tube would stay in until she is able to take enough nutrition by mouth.  In the meantime, it seems to help to expose them to a variety of normal foods even if she is not able to consume them.  She can still see them, and smell them, and hopefully even taste them even if she cannot chew or swallow them.  That seems to help the process later on.

I will keep you and your d in my thoughts. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
I agree that if she is not drinking that 48 hours is far too long. She could be quite physically unwell by that stage. She will also lose weight very rapidly if she is has been well fed via NG over the last 5 weeks. 
Home feeding via NG is definitely something that some have done, and could be an option if she continues to find it too hard to eat. You mention that she is suicidal as well though, so it may be she really is safer in hospital if you are unable to provide full time care at home.

Although not eating sounds strange, the most important thing for your D at present is full nutritional rehabilitation. The more her brain and body heals, she may be more open to possibilities of trying foods. There have been some children who have been NG fed at home for a very long time. As time goes on, most do start to feel the need to eat normally, and want to eat normally. Look up Bottle who is one such member I can recall. You can look at all the threads she started there. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
I think this was a really dangerous decision by the team. It is like taking the pacemaker out and wait if the patient gets a heart attack...
I have never heard of a patient before that is send home without tube after not eating for so long and just give it a try.
I would also not wait longer than 24 hours without drinking.
Keep feeding. There is light at the end of the tunnel.
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greekdude
Hello @worriedwarriormum , very sorry you are going through this. I am just new to AN, a father of son with AN, so not much to help, but I am curious ,  what happened during your D's first hospitalization, and if you D did so well afterwards with FBT / OP , why couldn't you apply the same methods/techniques as before? How did she start to resist again? Any signs before that? Others have said ED gets mad just before WR. Sorry for sounding naive, I am sure that if those questions made true sense they could have been asked by the more experienced members here. And always hoping for you and your D. 
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worriedwarriormum
Hi Torie
Thanks for your reply .
The answer is no the NG is not in place , as she kept removing it. It was thought to be unlikely that normal feeding could be resumed but that it had to be a risk worth taking and that a bed would be reserved for readmission.
Yes , a high risk strategy but as it was there was no sign of a shift . The hope is that the change could potentially provoke some change in behaviour.
Unfortunately a readmission now looks inevitable following our outpatient appointment tomorrow.
Thanks for your care , will update soon
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worriedwarriormum
Thanks very much greekdude for your response and questions. I don’t think it’s naive at all . We’re still relatively new to this awful illness too and I think you have hit the nail on the head . It seemed that she did indeed succumb to the much stronger version of AN as WR was approached.
She was quite compliant with FBT eating what was put in front of herewith a few struggles , but mostly compliant . Not relevant for you with a son but her periods returning may have been a trigger and the illness took on a new ferocity , restricting more and more to the point that she also stopped even drinking water so an emergency readmission was essential. Thanks for the support, it really helps and I wish you and other caregivers out there all the luck in the world
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worriedwarriormum
Thanks so much food support_Aus, yes there was a plan and I sympathise with your D ‘s situation
. So glad the puppy was a motivator for good ! We thought of that too early on but D is too practical and said she thought a puppy would. E unfair on our 2 cats !
Thanks for the suggestions, it does now look as if the readmission is inevitable although one drink today was a major step . However that is all that has passed her lips sine yesterday lunchtime.
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ValentinaGermania

Yes , a high risk strategy but as it was there was no sign of a shift . The hope is that the change could potentially provoke some change in behaviour.
Unfortunately a readmission now looks inevitable following our outpatient appointment tomorrow.


It is not very professional to expect a change in her behaviour in that state to be honest.
It sounds like the team thinks she can control her behaviour and not eating is her choice. It is not. It is AN in her head that keeps her from eating and all that works is to give her full nutrition before you can expect any change in behaviour.
Keep feeding. There is light at the end of the tunnel.
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Torie
How is her weight? xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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worriedwarriormum
Hello Torie
I am not sure about the weight but believe it is about 5 kgs off WR. But as you would understand, as she is not able to eat anything by herself , that changes quickly unless she is receiving nutrition via the ng.
I tend to agree with your comment on the decision of the team to try sending her home but in this new situation ( for us) we felt we had to take it on board
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Torie
I tend to agree with your comment on the decision of the team to try sending her home but in this new situation ( for us) we felt we had to take it on board

I think we all tend to go with the advice of the professionals ... until they give us reason to doubt them.  After all, we are "just" parents and they have had all the training.  It is super unfortunate how many of us have received bad advice from them.

xx-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
Torie wrote:

I think we all tend to go with the advice of the professionals ... until they give us reason to doubt them.  After all, we are "just" parents and they have had all the training.  It is super unfortunate how many of us have received bad advice from them.

xx-Torie


I can subscribe all that, we had much bad advice from so called professionals here.
Trust your instinct and your gut feelings. You know your d best. And try to be at least as good informed as the professionals are so you know what is a normal therapy decision and what is not normal.

It is definitivly not normal to send a patient home without tube to give it a try if she perhaps eats at home...
They could have tested that with the tube in for 3 hours/one meal or snack...
Keep feeding. There is light at the end of the tunnel.
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Enn
Hi there worriedwarriormum,
How did it go today/yesterday. I am in Canada so not sure when you had the appointment. I hope whatever happened, that you are comfortable and that it is a way forward.
xx
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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worriedwarriormum
Thanks again for your replies and comments and thank you @Enn.

The appointment resulted in a readmission which was essential as she had lost 2 kgs and was at risk of dehydration. It feels as if we are no further forward or worse but will meet with the team today
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Enn
Sending hugs!Thanks for the update. Wishing that the plan that comes next is feasible for you all.
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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Torie
I'm so relieved that the nutrition and fluids are going in.  Are they working on a plan to reintroduce food by mouth?  They really need to come up with a good plan for that.

Thanks for the update. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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