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

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freya
Hello to the most caring, thoughtful people online.

My question today is what happens if there is no residential treatment option, and your family and child have come to a point where things are deeply critical. 

We were told today that we must tell our treating team if we are not coping at home. I feel some of us in the family are very close to this point. In addition to the food issues, refusal, arguments, weight loss there is also terrible awful behaviour that is not representative of our child at all, but nevertheless it is there.

Hospital and day programme are there for medical support, but where we live there are no residential centres that could help long term. What happens in this case? Do we bounce in and out of hospital for years? Does this become respite as well as medical care?

Any thoughts?
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sandytoes

Hi freya, 

I look forward to reading the responses you get as we are in the same position.


It is really disheartening to read over and over again that ‘some kids need a higher level of care’, and to know your child is one of them but no such care is available. (Or it is available, but far away, at a huge cost, and the child has to be willing to go, so still not a viable option.)



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deenl
Hi Freya and Sandytoes,

My son was admitted to the local adolescent psychiatric clinic, in patient but the treatment went terribly wrong and he lost weight there, going down to a BMI of 11. Meanwhile, they were convinced that he was on the autistic spectrum and wanting to focus on that! Needless to say we were in a terrible state and felt stuck between a rock and a hard place but eventually we took him home and going back was not an option. We did have very careful medical monitoring by an ED experienced pediatrician. To cut a long story short, I am sorry to say that, yes, we did have to grit our teeth and do it at home for the most part. After a few months of very little progress, he did go into the local general hospital for medical monitoring and to change up the routine. This marked the beginning of the long and slow climb back to health because I did not allow him back into the kitchen after he came home and we got the meals down to about 45 minutes and the snacks to 30 minutes. He gained steadily but only at a pace of 300g per week. No matter what I did, I could not get more on than that. 

I was difficult and we were very lucky in that I was planning to but had not yet returned to work so I was able to basically give up all other aspects of life in order to plan, shop, cook, clean endlessly. It took everything in me to keep putting one foot in front of the other and grind away, day in, day out. I went on medication for anxiety/dpepression to keep me going. I described the work as the most boring and at the same time the most important work of my life. I leaned on whatever support I could find in order to keep going.

The first two years (from suspecting a problem to him returning to school) were the toughest. Then gradually a semblance of normal life returned but we still had to maintain the structure of 3 meals/3 snacks, all supervised. We still have that structure and I do all the cooking but he does not need to be supervised.

It is now about 5 years later and he has just graduated secondary (high) school with his peers and enrolled in university. In the car the other day he was talking with his brothers about the foreign exchanges (where students from different countries swop visits of a week or 10 days with each other) that he missed in secondary school. He spontaneously said that he was going to grab opportunities to do fun stuff like that with both hands in university. Today, he got an email about the introduction week for university and immediately signed up for the fun and games. All this from my usually careful and hesitant kid who is wary of new experiences! He is maturing in himself and expanding his horizons and I nearly have to cry with happiness each time.

My son was very resistant to any help for the ED and I did ask other parents what they had done. I got such a wonderful variety of answers on this thread. Maybe you will find a few ideas that resonate with you.

Wishing  you continued strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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MKR
Hi @freya,

It sounds like you are stuck in a cycle.

While your D is still at home, do you have any incentives/ leverage to move things forward?
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Enn

So this is how I see it. If you are really struggling you need to ask your team what next steps they suggest for you. I am sure they have dealt with others in your situation. 
Some unfortunately need to go out of their cities to get more intensive care. Yes it can be expensive . We can only do our best with what we have and if you need more support please ask your team what the next steps are. My d was IP one hour away and if she had to have intense outpatient hospitalization that was the only hospital we could  access.   We did not need it but we had it as back up. And I was very willing to go back and forth if required. 

I am sorry. I wish there was the magic answer for you. Ask the team and have a goal of what is available and when. 

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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freya
Enn wrote:

So this is how I see it. If you are really struggling you need to ask your team what next steps they suggest for you. I am sure they have dealt with others in your situation. 
Some unfortunately need to go out of their cities to get more intensive care. Yes it can be expensive . We can only do our best with what we have and if you need more support please ask your team what the next steps are. My d was IP one hour away and if she had to have intense outpatient hospitalization that was the only hospital we could  access.   We did not need it but we had it as back up. And I was very willing to go back and forth if required. 

I am sorry. I wish there was the magic answer for you. Ask the team and have a goal of what is available and when. 



Unfortunately residential doesn't exist in my state, and I can't figure out if there are even centres in my country-Australia. I know they are building one that will open in 2021 but with only 12 places. We do have outpatient that is 4 days a week, and that feeds them 3 of the meals. I will ask about residential but we have various covid travel restrictions that make things very problematic too.

Thank you
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freya
MKR wrote:
Hi @freya,

It sounds like you are stuck in a cycle.

While your D is still at home, do you have any incentives/ leverage to move things forward?


These aren't working sadly and there are very few.
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freya
deenl wrote:
Hi Freya and Sandytoes,

My son was admitted to the local adolescent psychiatric clinic, in patient but the treatment went terribly wrong and he lost weight there, going down to a BMI of 11. Meanwhile, they were convinced that he was on the autistic spectrum and wanting to focus on that! Needless to say we were in a terrible state and felt stuck between a rock and a hard place but eventually we took him home and going back was not an option. We did have very careful medical monitoring by an ED experienced pediatrician. To cut a long story short, I am sorry to say that, yes, we did have to grit our teeth and do it at home for the most part. After a few months of very little progress, he did go into the local general hospital for medical monitoring and to change up the routine. This marked the beginning of the long and slow climb back to health because I did not allow him back into the kitchen after he came home and we got the meals down to about 45 minutes and the snacks to 30 minutes. He gained steadily but only at a pace of 300g per week. No matter what I did, I could not get more on than that. 

I was difficult and we were very lucky in that I was planning to but had not yet returned to work so I was able to basically give up all other aspects of life in order to plan, shop, cook, clean endlessly. It took everything in me to keep putting one foot in front of the other and grind away, day in, day out. I went on medication for anxiety/dpepression to keep me going. I described the work as the most boring and at the same time the most important work of my life. I leaned on whatever support I could find in order to keep going.

The first two years (from suspecting a problem to him returning to school) were the toughest. Then gradually a semblance of normal life returned but we still had to maintain the structure of 3 meals/3 snacks, all supervised. We still have that structure and I do all the cooking but he does not need to be supervised.

It is now about 5 years later and he has just graduated secondary (high) school with his peers and enrolled in university. In the car the other day he was talking with his brothers about the foreign exchanges (where students from different countries swop visits of a week or 10 days with each other) that he missed in secondary school. He spontaneously said that he was going to grab opportunities to do fun stuff like that with both hands in university. Today, he got an email about the introduction week for university and immediately signed up for the fun and games. All this from my usually careful and hesitant kid who is wary of new experiences! He is maturing in himself and expanding his horizons and I nearly have to cry with happiness each time.

My son was very resistant to any help for the ED and I did ask other parents what they had done. I got such a wonderful variety of answers on this thread. Maybe you will find a few ideas that resonate with you.

Wishing  you continued strength and courage,

D


Thank you for the links!!!
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Foodsupport_AUS
As far as I am aware there is no residential services in Australia. 
There are some inpatient (specialist psychiatric eating disorder) units which offer short stays, in the private system. 

When my D was very ill I also wondered about this option. I also considered travelling overseas - both for residential type treatment or intensive outpatient treatment. As a sole parent and the only source of income, it really was impossible to consider any long term care that didn't involve sending my suicidal 14 -15 year old across the other side of the world on her own. Something I decided was not in her best interests. 

It did lead me to consider what are the benefits of residential type treatments. Mainly I think the ability to offer consistent nutrition for a more prolonged period of time , compared with hospitalisations, with some sort of support for the person as well. It gives caregivers some respite perhaps. There is little to no evidence of improved recovery rates, or better long term outcomes. 

From what you have said, it does sound like you need more support for you, and for your daughter. Please do talk to your team to see what else may be available to you. Ultimately your D needs to learn to eat in her home environment. It is a long tedious and frustrating process that takes much longer than any of us ever want. The best thing we can do for ourselves is make sure we establish our own support systems so that we can have the stamina to keep going and support our children. 
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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freya
Maybe it's just simple jealousy. That families in America for instance hand these residential centres that their children can go to for extended periods. And we literally have nothing. I see on the FB groups Americans asking which centre is recommended in which state, and I want to cry. 

This does led to another question which you raise, what is the effectiveness of residential treatment. From the respite side I can see that it's huge. From the recovery side--I'll need to look at that. Not that I have a choice but maybe to soothe my shattered heart.

Thank you for listening.
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Barberton

Hi @freya
I was just saying to someone this morning that getting help should not be this difficult. We get a lot of empathy, "This must be so hard for you", but very little practical help, "Take two of these and call me in the morning"! That's because everyone's journey is different and everyone's access to support is different.

It sounds like you need to ask for more help (and that's okay). If it's not your medical team, then you need to call in friends, relatives, or a respite care service. 

I think here in Perth there is a mum who has founded a support group around care for carers. I'm sorry I've vague about it but if you call The Perth Children's Hospital Eating Disorder Program they might be able to point you in the right direction.

Sometimes the best thing to do when feeling overwhelmed is to stop and make a plan. Every day you need to get three meals and three snacks into your d. How are you going to do it? Will it be easier to eat the exact same thing every day for 1-2 weeks so that you aren't agonising over what to shop for or cook? Have you clearly defined the boundaries of behaviour in your house so that it limits angst and arguments? What routine is going to work for you and for your d? Having a sense of what comes next might help you feel a bit more in control. Your d may fight you to start, but once a routine is set, she may back down and follow along.

We all dream of dropping our kids off at a residential care unit and going home to get some time alone without worrying about whether they ate all their food. But for 99.9% of us that just cannot happen. Keep going. You can do this (even when you think you can't).  

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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