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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Stan

Dear all,

 

For months now, our D is totally refusing any food, hardly drinking enough and spends most of her time in hospital, exclusively fed via NGT. She resists admission to hospital (with police/ambulance sometimes involved).

In hospital she resists force feeding via NGT, refuses medication, or engagement and requires security to restrain her, sometimes needing to strap her to the bed and/or sedating her via IM.

She also spent some time in the hospital psych ward several times, but because she does not eat, was transferred back to the paediatric ward after days of starvation.

She is self harming, in hospital and at home. During her short stays at home, she tried to run away and also attempted suicide.

 

We had a very good private multidisciplinary team and did it all by the book (“taking control” of the food, Magic Plate etc), which just didn’t work and left us watching her enter a terrible downwards spiral. 

We now have a community team (great case worker and psychiatrist) to work support us and work with her while she is out of hospital, but her short stays outside hospital, the unpredictability of the discharge dates, don’t give them much chance to attempt engaging, which she's not keen on anyway. 

 

We suspect that the ED is a symptom of an underlying mental condition and that medication (or maybe CBT) could create the missing compliance with treatment and improve her life. So far we didn't get any traction with doctors (Paediatricians, psychologists/psychiatrists) to get her psychiatrically assessed, despite our insistence and evidences we have of her specific behaviour/patterns growing up. 

The rationale is that ED would prevent diagnosis, that her alleged other psych issues are not the priority, that overall her mental health cannot be treated concurrently or before her body/brain is recovered, that a treatment would not be efficient as long as ED was present. With alternating periods of total starvation, obviously, no change is to be expected.

 

We feel like we are in a dead-end and would like to connect with parents in a similar situation and learn of triggers for change.

15 yo D, Australia
Unknown onset of ED, currently anorexia
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Enn

Hello and welcome. 

I am sorry you needed to find the forum and hope that we can help you. 
Many of our kids present with many potential diagnosis based on symptoms.(borderline personality disorder, psychosis to name a couple) However, many of us have found that ED takes precedence and with nutritional rehabilitation and weight gain that those other dx were not correct.  Some kids do have underlying issues but not necessarily as a cause of ED. Having written that, my d does have underlying anxiety, but it was made worse with AN. She did start meds at the beginning and did need them for about two years now off for one year and doing well.  Also when they are very malnourished, meds do not work well. The weight goes up then over time adding in meds may be helpful. I am not sure from what you note above but how is her weight? Is she WR? Is she gaining? What are the issues you are experiencing. Understanding more of your situations may be helpful to the forum members so that they can answer more appropriately to your concerns.
I do agree with your team that states unless she is nourished , other treatment modalities MAY not work or may not work very  well. 

There are many treatments alongside feeding you may tap into, like CBT and DBT and EFFT, and TBT.

Sending my best, and oh, please ask all the questions you have.


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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Barberton

Hi Stan,

I am not sure what help I can offer you. I noted that you are in Australia. I am in Western Australia so have some familiarity with pathways to care in this state. FoodSupport_AUS is in Melbourne and is Moderator, so she will no doubt chime in too.

What you are going through is really, really hard. But it sounds like you are doing what you can to keep her safe and get her help. While it is super that you have a team of a caseworker and psychiatrist, your d probably needs more nutritional rehabilitation before she is capable of engaging in any form or reflective therapy. How you manage this when she is resisting NGT is a tough one. What is your caseworker suggesting?

When I'm feeling overwhelmed I ask myself, "What's the problem?" I limit myself to just one thing and it can be a really small problem at that. And then I work on solving just that one problem. It gets the wheels moving and helps me feel like change is possible. I know that's simple advice that might seem meaningless. But keep it in the back of your mind as you move forward. It's all about having lots of tools in your box to work through this.

D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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teecee

Dear Stan
so glad you came here and feel for you that you feel stuck at this present time. Anosognosia prevents them being able to comply or change and hence why we needed to keep swimming on day after day, focusing on feeding as best we could.

Nutrition and feeding the brain will slowly bring your D back but it’s so frustrating - the pace of that journey. Personally I was quite amazed that nutrition improved the depression and suicidal ideation here.

Magic plate/LSUYE does not work for everyone but FOOD IS MEDICINE/FOOD IS ALWAYS THE ANSWER does. Sending you virtual hugs. There will be others in a similar situation to you to chime in and support soon but in the meantime please ask any questions or feel free to vent. Xx

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

Eating disorders do commonly occur with other illnesses, however as mentioned above it can be really difficult to tease things out. My own D also cycled in and out of hospital repeatedly, she was in hospital for 9 months of her first year of illness. Like your D she truly struggled to eat at home, and required regular NG feeding and hospitalisation. I am not clear from your story but I imagine she is eating in hospital prior to discharge?

We did manage to get some psychiatric support for my D whilst in hospital, she was allowed leave from the hospital for me to take her to psychiatric appointments. It may be that you can ask for this sort of support, or ask for psychiatric liaison in hospital? When malnutrition is extreme we found little benefit of medication. Some have found medication can help with eating but certainly that was not the case with my D. She also struggled with more structured therapies until she was much better as well. The main benefit of the psychiatrist for my D was the recognition for her as regards her degree of mental distress, she had severe depression and was suicidal, and soon after start self harming as well. She needed someone to hear her and support her early on, even though it did not improve things in any great way. What changed things was time, and full nutrition, then later on medication and therapy. 

I agree with you that cycling malnutrition is devastating to their mental and physical health. My own thought is that it is worse for their health than chronic lower level malnutrition. Have they considered some other options as to how they can help manage this further? How can they change supports for eating and achieve a less oppositional environment.
You don't mention where you are, but have you got in touch with EDFA - via facebook? They have groups around the country which offer more local support. 
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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Stan
Dear All,

thank you for your responses.
My D hasn't taken a bite in any food for 3.5 months now. She's WR, her obs are OK when she leaves hospital. But all that time she's been totally refusing food in hospital or at home. She fights NGT forced feeding with all her strength, pulls out the tube.
We  know about Anosognosia. We accept it as a feature of her ED (and other illnesses). No one is able to get her to eat. Not the formidable nurses, not us, not the doctors. 
Our only hope, a psych diagnosis that get her the required help (whatever treatment is appropriate) to suffer less. Because currently with her pure ED diagnosis, though she is attempting suicide and runs away, though she subjects herself to self-harm and a cruel cycle of alternating forced-feeding and starvation, no one is able/willing/capable of attempting to lessen her suffering.
The challenge is to find a psychiatrist she would be able to form a therapeutic relationship with, so she finds some reason to comply (as implied by Foodsupport_AUS). 
If she was an adult, we were told by a psychiatrist, she would be left to die. 
Her opposition to treatment disqualifies her for any "recovery" program. No one seems to know what to do with a young person who has forgotten how to eat or just does not want to (she believes she does not need to eat to live a normal life. She doesn't want to get better, doesn't ask for compassion, she just wants to be left alone and do her own thing - starving).

¯\_(*.*)_/¯
15 yo D, Australia
Unknown onset of ED, currently anorexia
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teecee

Hi Stan
totally understand what’s you are saying. I take it you have looked on the ‘super resistor thread’ here ATDT? There are and have been other carers in the same position as you who have had improvement and recovery is possible. 

I hope you are able to get the practical support you need in Australia 

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Torie
A couple of thoughts:

Many who are thought to be weight restored are actually still in need of more weight for brain healing.  Setting the target weight too low is the most common error made by clinicians.

Is she being exposed to the sights and smells of food?  I can't remember who it was who went through a l-o-o-o-o-o-n-g process of tolerating food in proximity / holding fork / putting a bite in the mouth and spitting it back out, etc as a very very slow gradual path to eating.  I think they were successful in the end.

Sending warm thoughts your way xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Stan I am not sure where you are based. From what you are saying they are discharging your daughter despite the fact that they know she will not eat at home, and I presume from what you are saying without an NG tube as well? Are the hospital team liaising with your team outside of hospital to formulate a plan as to how to make sure that nutrition is continuing no matter what? Allowing her to intermittently starve is perpetuating her ED, and is likely contributing to much of her suffering.
The NG feeding was very much used by my D as a self punishment as well as the self harm - and it was all ED. 
If you don't wish to put your location on here, you can email me some more background - click on my icon and you can email from there. I may be able to put you in touch with more on the ground support. 
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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Katie73

Hello,
i rarely reply but I wanted to try and let you know that at the very least you are not alone. My daughter hasn’t eaten a bite or drunk any water since 31st January - so 3 1/2 months now. She was diagnosed last February after losing 10kg in 8 weeks but we now know she was restricting for around 18 months before that. She sounds very like yours - highly resistant to tube feeds, needs to ‘put up a struggle’ before she can allow herself to be fed, and just wants to be left alone to die. She also refused food last year from May-July, was detained and inpatient in an ED clinicwas tube fed and then started to eat spontaneously after taking the tube out herself with the intention of never eating again. They restored her weight to a level the doctors were happy with but her mind did not improve. She was discharged in December, eating ok, but it was all too much and she stopped eating and drinking and has not re-started. She is now detained again in another clinic. We are pushing for more weight (this is hard in the UK but so think we will get there) and I am hoping that sustained nutrition at a good weight for her - not just the average - will be the key to getting her mind to improve and then she will gather the strength to eat again. If I were you, I think so would focus on the ED now - it is blocking anything else - and get the team to properly weight restore her using the tube, using medication as necessary to try and make this as manageable as possible for her. Don’t let them discharge her too see if she will eat at home’ then she starves for a few days and comes straight back, until she is at what you think is a good weight for her as an individual (no average targets). This is the first step. I wish you good luck. This is horrific - some days I think my daughter will never eat again and just languish in horrible hospitals - she doesn’t really have many friends left already, but most of the time I can stay positive, remember that she is still the lovely girl that she was two years ago, but she is undergoing an almighty struggle that no-one, least of all her, understands. Hang in there. 

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