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

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luni
Hi,
My D has multiple hospitalizations in the last two months. It seems that we could not feed her at home at all. However, she can eat well at hospitals. NG tubes make it works.

Does anyone here have experience using NG tubes at home? Thanks.

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Foodsupport_AUS
Welcome to the forum. Sorry that you have had to find your way here. 

In answer to your question, some parents have had success with NG tube at home and others have not. Find a team who will agree to this is one of the first issues. My D was unable to eat at home as well, and could only eat if she knew there was an immediate recourse to a tube for many months. Although requested on a number of occasions none of the team my D was under was willing to arrange NG feeding outside of hospital in any form. They were very keen to keep this a hospital only option, even though it is a relatively simple procedure. 

On the other hand I know that both sotired and bottle have had NG tubes at home for prolonged periods of time. 
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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ValentinaGermania
Hi luni,
welcome here and sorry that you have to join us.
I know that there are patients having NG tube at home, the big question is for me, is she all day on NG tube in hospital or is she eating real food there? And if she is eating there, what problems did you have to make her eat at home? Can we help you with that?
NG tube is no solution for a longer time. The risk that you do not get away from it any more is high. She should eat real food in very small amounts before tube feeding so that she does not forget the taste of food in her mouth.
Tina72
Keep feeding. There is light at the end of the tunnel.
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luni
Hi Tina,
Thank you so much for answering my question.
My D eats well with real food at hospital. She said that she has no choice at hospital, so she eats there.

Right now, whenever we come home from hospital, she almost quits eating. And then she has to go back to hospital to stabilize her condition.

So, I am thinking the big difference between home and sophistical is that we do have NG tubes at home.  What if we have NG tube option at home, and she then maybe eat home?!

Luni


tina72 wrote:
Hi luni,
welcome here and sorry that you have to join us.
I know that there are patients having NG tube at home, the big question is for me, is she all day on NG tube in hospital or is she eating real food there? And if she is eating there, what problems did you have to make her eat at home? Can we help you with that?
NG tube is no solution for a longer time. The risk that you do not get away from it any more is high. She should eat real food in very small amounts before tube feeding so that she does not forget the taste of food in her mouth.
Tina72
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luni
Hi,Foodsupport_AUS
Thank you for the warm message.
I was thinking of using tubes as plan B to get her eat the real food because she can do that at hospital.
I think you are right. The first question is where to find the service to do that?
Or can we learn to do it ourselves?

I just couldn't get her to eat enough to remain stable...
Thank you!


Foodsupport_AUS wrote:
Welcome to the forum. Sorry that you have had to find your way here. 

In answer to your question, some parents have had success with NG tube at home and others have not. Find a team who will agree to this is one of the first issues. My D was unable to eat at home as well, and could only eat if she knew there was an immediate recourse to a tube for many months. Although requested on a number of occasions none of the team my D was under was willing to arrange NG feeding outside of hospital in any form. They were very keen to keep this a hospital only option, even though it is a relatively simple procedure. 

On the other hand I know that both sotired and bottle have had NG tubes at home for prolonged periods of time. 
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Kali
Hi Luni

Could you let your daughter know that if/when she does not eat at home she will go back to the hospital and work something out with her drs. to put that protocol in place for her and then follow through on that? I think that mjkz's daughter had something like that arranged.

Since she eats at the hospital when she doesn't have a choice, I think your daughter may be indicating to you that something needs to be set up at home where there is no choice to not eat. How can that happen?
Stop all activities? Keep her home from school? Take her back to the hospital every time there is food refusal for 24 hours?

A tube at home might be difficult since she may resist and then you could then find yourself struggling physically with her, which might not be helpful.

Kali


Food=Love
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Tali97
Hi Luni,

As someone who used an NG tube at home. He was using it in the hospital before coming home and was not able to eat enough to gain weight without it. I cannot remember anyone on this board that used it at home that did not have a child who used it to receive the majority of their nutrition.  

Yes, you can learn to insert an NG tube at home, but it requires the cooperation of the person being tubed.His tubes were changed every time he lost one due to vomiting. You also have to ensure that the tube goes into the stomach and not the lungs. 

Does the hospital have any advice about what to do when she does not eat at home? Can they not make an arrangement that you take her back to be tubed if she does not eat or an alternative location near your home. 
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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hertsmum
Hi Lini. I fed my 16 year old D at home by NG tube. 100% of her food (ensure) and water, she would not eat or drink anything by mouth. She was totally compliant with the tube, and it wouldn’t have worked otherwise. I think short term (a week or so in our case) it worked fine, but it was very time consuming and pretty much took over our lives. The hospital supplied us with a pump, sterile giving sets, testing strips to make sure the tube is in the stomach not the lungs. Happy to chat with you if I can help
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ValentinaGermania
luni wrote:

My D eats well with real food at hospital. She said that she has no choice at hospital, so she eats there.

Right now, whenever we come home from hospital, she almost quits eating. And then she has to go back to hospital to stabilize her condition.



So you will not need a NG tube and the challenge is to find a way to give her no choice not to eat at home. I think the NG tube is the last thing we should use if nothing else works and there is a high risk to damage something if it is not set professional. And what would be EDs next step: she would eat only through tube and forget to eat normal food at all.

So I would like to ask some questions to try to help you:
What did you do at home when she refused to eat or did not finish her meal/snack?
What leverage can you think about to give her for a finished meal (that is depending on age, very young ones take stickers or money for computer games)?
The big question is: what is different between hospital and home? I would bet it is not ONLY the NG tube...

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