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

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tdm13
Dear all,

Our 11 yrs d is in hospital since 3 months after losing 6kg in 6 months for the fist time before hospitalisation due to AN.

She has regained most of her weight loss with a NG tube solely, but has completely stopped eating & drinking naturally. She now relies entirely on the NG tube and has no intention to eat naturally or fight the sickness. The treatment is not FBT, but rather traditional with little pressure to eat, little therapeutic support (at least while she has the NG tube), and us parents put on the side...

The team has set a weight  target of 27kg where they remove the NG tube, and another of 25kg where they put it back. D is however not eating nor drinking when it is removed, such that they have to put it back after 4 days later. It already happened twice in the course of a month, such that her weight is yoyo-ing and she still has no intention to eat.

Has any d been stucked for several months on NG tube?
Is such weight yoyo-ing and NG tube placement/removal roughly every 2..3 weeks standard?
What can be done to desensitize and get rid of NG tube?

Thanks for your feedback, it is so appreciated ;-)



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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hyacinth
Our D was older (17 yrs), but was on the NG tube for around 3 months. The staff worked with her intensively to try to get her to manage small but increasing amounts of first water/ then Ensure whilst remaining on the tube. As progress was slow and she was expressing very little motivation to get off the tube, they also started to restrict family visits, depending on whether she was managing the amounts of Ensure they had asked her to try. It sounds harsh, but I think it helped to force her to progress. And a further development was that they had reorganized the unit to keep all the patients on the tube together and she found this really unpleasant and found the willpower to take all her calories by mouth (initially through Ensure and then gradually with food).
I am sure it is different to for each child, so you need the team to work with you to see what helps your child best. Good luck - I am sure you will get there!
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OneToughMomma
tdm,

It's good that you know your d is physically safe, but it seems like there is no plan to get her actually WELL.  Have you spoken to her team about their plan?  You could say that what they are doing is not working, so what's plan b?

Sending hugs,

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Psycho_Mom
Hi,

Yo-yoing isn't good. If your d has regained "most of what she lost," and she initially lost weight last summer, then her weight likely isn't high enough. Kids in puberty are supposed to be gaining weight like crazy, so even if she gained back ALL of what she lost, it wouldn't be enough to get her back on track with where she should be. 

Setting target weight too low is a very common mistake of many clinicians, especially ones who aren't up on the latest evidence based research. Does your medical team have a full growth history and can you get them to agree to up her weight some more, as a first step to getting off the ng?

After that, probably baby steps (taking sips of Ensure for example, working up to showing that she can eat BEFORE they take the tube out ) would work better. Progress in this illness often happens in baby steps. When physical health is ensured (ie with the ng tube) it is better to do one tiny step successfully than repeatedly failing at taking a big one.

AS for HOW to get her to take a baby step. It's not uncommon, in fact it's normal, for sufferers not to want to get better at this stage. I bet you could get her to take a bite or two. Keeping in mind that immediate rewards and consequences work best. I used to tell my d a story, get her interested, and then say "after you take a bite I'll tell you what happens next." 

best wishes,

D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Tali97
My son was older and at home when he came off the NG tube. It was a gradual transition over from tube feeds to drinking milkshakes(dairy free) and then food. I think that the transition took over a month and was guided by a dietician.  
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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tdm13
thanks for all the feedbacks, let me add some precision:

  • The refeeding is entirely up to the hospital team: this is different than FBT, such that we as parents are restricted to see our D (1h/week), especially now that she is not eating at all. Restrictions work as a mean of building trust with doctors, incentives for eating, and time to face one self and mature. Not sure we agree fully, but that is the method used in this service...
  •  The team does not want to "force" or put extra pressure on D to eat: she can decide & go at her own pace (we are talking up to 6 months residential stay usually), which is veeryy long! Also not sure we agree fully, but again that is the method used...
  • The NG tube then acts as a safety net... However they prefer to remove it completely when the a certain weight is reached, as they had bad experiences with children who could not eat a little (baby step) and sustain it with the tube in, resulting in over 8 months of partial tube feeding. It is true that if the removal weight is higher it will leave more margin for natural re-feeding: to be discussed with the team.
  • Discharge for the hospital will indeed be considered when natural eating is fully restored and weight slightly more that her previous weight (she has not grown much as still pre-puberty)
cheers

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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Bottle
Hi, my D was at home with an ng tube for 15 months and she didn't eat any food at all for 7.5 months no matter what was attempted. She was weight restored to 107% of where she needed to be fairly quickly but still would/could not start eating again. Then when the "right"professional got involved she started building up from a lick of puree to full nutrition bit by bit and removed the tube completely last July. She has continued to progress and is now able to make more and more substitutions to her plan but still needs supervision as a safety net.
She was fine with the tube for that long and in the community and in my limited experience I would advocate it being used more to limit long term low weight situations and get proper weight restoration quickly. But my D is one of the ones for whom there are NO incentives or any way at all to change her mind until she decides to. Everyone is different. For her it is about spinning things in a way that helps her to make empowered decisions without being told what to do. Nightmare.
That said, this time last year she was still tube feD and eating two tiny meals, now she's eating big bits of chocolate cake as long as they're part of the dinner plan :0)
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
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Psycho_Mom
Hmmmm,

Do you have her height and weight growth records? You can go to mygrowthcharts.com and plot them and get an idea of what her individual weight should be (not an average of girls her age, or a number based on some time in the past when she may already have been ill). Even if you don't have her records, you can just look at an average growth chart and see that it is normal for 11 year old girls to gain quite a bit. The fact that she hasn't gotten taller or started puberty may be misleading; growth in height can be delayed as a result of lack of nutrition, and gain for puberty can preceed developmental changes.

It sounds like you don't have a lot of choice in the care your d receives? That's hard. Up to six months, with you seeing her only once a week also sounds super hard. (And completely unnecessarily restrictive. Family based therapy has been shown to be the most effective method of treatment for eating disorders in adolescence, partially because spending a lot of effort trying to "establish trust" with doctors makes little sense, when the trust is already established with parents.) 

But yes, if she's at the moment unable to eat at all then of course she needs hospital and ng tube. But please know that no matter when your d comes home, she will need your support to maintain her health and relearn to eat. If you havne't already found a list of good reading on this site, here's a few good sources:

Brave Girl Eating
How to Help your Teen beat an Eating Disorder--Lock and Legrange
kartiniclinic.com
Decoding Anorexia--Carrie Arnold
And this site!!

Please feel free to ask lots of questions, take what is useful to you and leave the rest, and
best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Morgana
My d has been in ip for 5 months with a ng tube for over 3 months. She drinks a glass of ensure for her afternoon snack and also eats literally a few mouthfuls of egg and toast for her dinner, but the bulk of her calories are through the tube. She drinks water with her feeds but will not drink a drop more than on her meal plan.

They did try to get her to think about accepting more food and drink orally about a month ago, but she refused. She became very anxious and just the thought of eating food started to set her back.

So now there is no plan yet to get her off the tube until she is within her healthy weight range. She has about 12 kilos to go. If she was gaining a kilo a week (which she isn't, because she has an exercise compulsion!) she would still be on the tube for another 3 months. 

I know it may be difficult getting her off the tube when she's been on it so long, but I can see it's also the only chance of getting her near her target weight range. And that's the most important thing, because who knows what changes being w/r will bring! I'm hoping she may even want to come off the tube herself once her brain has had a chance to heal.

Could you ask the ip unit for regular and lengthier family visits?
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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tdm13
Hi all,

Getting off the NG tube does not seem easy nor rapid based on all your feedbacks... For the moment we have to let the hospital team handle this transition: we can suggest and discuss things but they have their methodology.

Thanks for all the references about Maudsley / FBT: we are actually in the process of getting familiar with it, as a plan B if hospitalisation does not bring improvement in her behaviour with food after 4...5 months. We would however be on our own at home to get her to eat (still with a therapist and pediatrician to help) as there are no trained professionals in our area... but that is another story and quite premature to consider.

Cheers
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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Psycho_Mom
Hi,

It's great you're reading and getting all the info you can. 

One thing you may discover as you read more and more from parents on here: helping a child get through the growth years while recovering from an eating disorder and then staying ed free usually takes YEARS of parental support and watchfulness. Years. 

Brain healing only comes AFTER full wr. 4-5 months is a short time to expect a lot of improvement in ed behavior, I am sorry to say, especially if she's not fully wr. When she comes home from the hospital it is likely that she will need full meal support at home. And her need for this will very gradually lessen as she slowly relearns (often with your active assistance and exposure therapy) how to eat.

My d was refed in three months, but needed full meal support for a year after that, and only after that gradually was able to do more and more for herself. Now, 2 1/2 years after wr and long after the last of the puberty growth, she eats independently but still needs close monitoring, as she can lose weight easily. 

She however had a full and nearly completely normal life while she was recovering. She went to school, did activities, had friends. I just needed to schedule stuff so that she'd be with me for meals, or that there was a clear plan for meals that she could do.

keep asking questions,
best wishes,

D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Sotired
Ok so the problem your worried about is tube dependency.my d is on a Ng tube at the moment and has had long periods of time in hospital with one.at that time she fought over both fluid and food going in.the tube will come out one day,that's a given.until then there are a few things you can do.i found lollies a good way to start.a glass of water and a few lollies where every snack and meal was.after a few days start bringing lunch to the hospital.they cannot legally keep you away from your child and a one hour visit a week probably contravenes the human rights bill.it is far too draconian for a little girl.our team all built up relationships with my when we weren't there,when we were,just over time.and it's more important that she trusts you as she will be back living with you soon anyway.dont let the hospital make it into an us and them situation.she needs you,you are the one who can help.so take a sandwich in,gentle encouragement what ever she eats praise her.then 'we will practise again tomorrow.you can do this.i love you'.and then the next day try again.this is really the only way to work through those worry so.to present food at every meal time.
Whatever she eats is a start.its really hard but it can be done.get those doctors onside and start bringing the food in.good luck,
Sotired42
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PuddleduckNZ
My Son at 11 had a tube for quite awhile, he had to eat with it, and this is what I would advocate. He actually had it in at 27 and out at 31kg.

You ask - What can be done to desensitize and get rid of NG tube? The answer is - Eating food while it is in to transition to when it is removed, so she may begin to maintain weight eating food. Easier said than done!

I am so sorry this hospital does not get this simple fact and enforce this. Are they easy to communicate with? Could you bring food in and require her to have something small, a drink, lollies like sotired said, or some fruit? Start small and work up.

NG tubes are great and were part of my sons story, but at the end of the day the patient has to learn to eat food again. My Son was terrified of eating with the NG, at the end of his last admission he was eating well with it in place.

The longer she yo-yos the more difficult it will be.

If the facility is unlikely to change their protocol, and she is at a reasonable weight and not medically unstable, I would be inclined to chase up the FBT (or read the extensive stories here on ATDT of those doing it alone).

Good luck xx
Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 13.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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PuddleduckNZ
My Son at 11 had a tube for quite awhile, he had to eat with it, and this is what I would advocate. He actually had it in at 27 and out at 31kg.

You ask - What can be done to desensitize and get rid of NG tube? The answer is - Eating food while it is in to transition to when it is removed, so she may begin to maintain weight eating food. Easier said than done!

I am so sorry this hospital does not get this simple fact and enforce this. Are they easy to communicate with? Could you bring food in and require her to have something small, a drink, lollies like sotired said, or some fruit? Start small and work up.

NG tubes are great and were part of my sons story, but at the end of the day the patient has to learn to eat food again. My Son was terrified of eating with the NG, at the end of his last admission he was eating well with it in place.

The longer she yo-yos the more difficult it will be.

If the facility is unlikely to change their protocol, and she is at a reasonable weight and not medically unstable, I would be inclined to chase up the FBT (or read the extensive stories here on ATDT of those doing it alone).

Good luck xx
Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 13.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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tdm13
Thanks for all words of encouragement and advices!

It will be difficult for us to change the hospital protocol: although a different philosophy than FBT, it is a fully formalized residential approach that is not so popular in anglo-saxon countries I believe but quite common in central europe (we are from Switzerland). The long term recovery statistics of the hospital they shared seem very good (never had a re-admission). Drawback is that the program is harsh and long. We are worried that after 3 months hospitalization our d does not "respond" to the treatment: she got actually mentally worse as she was eating at home but not at hospital, although her physical health actually improved greatly thanks to the NG...
It is clear that we are looking to take over from the residential program and have her pursue her recovery as an outpatient, with us supporting meals and private therapist/pediatrician doing the medical follow up, the question is when is it the right time vs the benefit of the residential program...

cheers,


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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