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

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UKmumof3
Hi all,

I haven't posted in quite a while, but things haven't been good and I'm looking for some hope from anyone who has been in a similar situation.

D (13) was admitted to ED ward almost 5 months ago. She has been on NG tube since then and has not eaten a thing. She is now at her healthy weight though. She is on 3 lots of medication and has presented with OCD (present pre-AN). She has made many attempts to abscond from the unit and actually got out twice - missing for 2.5 hours the first time. She is highly competitive with the other young people and copied many behaviours, including pacing and self harm.

Because of the absconsion risk, she has now been moved to a high dependency ward (same place and with good communication between the staff). There are nurses on the ward who have plenty of ED experience. She now feels safer, but has continued with the element of comparing herself with the others back on the ED ward and is currently scratching herself a lot, leaving marks all over her hands. She started to pull her NG tube out all of the time so her feeds and meds have now been adapted so that she gets them twice a day (feed and meds together each time) and the staff remove the tube each time. She is highly resistant to having the feeds (this has become worse since moving to the new ward and possibly linked with reaching healthy weight) and needs to be safely held each time. She has not been into the dining room in several months. She continues to pace whenever she can, although this has reduced a lot. She is feeling immense guilt if she sleeps during the day and I can then hear her hitting her leg when she talks to me on the phone.

I have a Zoom meeting with the new consultant this morning to see what the adapted care plan will be and how they are going to approach things. They have had 2 weeks now to observe and get to know her. But my hope feels like it's fading by the day. There appears to be nothing which motivates D to want to get better and she hasn't seen her siblings in 4 months now. She is not allowed any leave outside of the unit due to the absconsion risk and she struggles going out into the garden because she doesn't want to go back inside and so collapses onto the floor.

Is there anything obvious which is being missed? Has anyone been in a similar situation and can give me any advice?

Thanks,
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Foodsupport_AUS
Sorry to hear that things have not improved as much as one would hope with refeeding. 

A few thoughts - is there a reason they are not continuing with weight gain? At 13 she should be continuing to gain weight and it is not at all uncommon for the UK to stop at a weight that is historically low for someone. In fact I would say it is expected. Another thought is that they are not challenging her not eating. Rather than insisting that every meal be attempted they are just accepting that she won't eat and avoiding this as a challenge. 

You are probably right that her resistance to having NG feeds may well be about fear of further weight gain, but that doesn't mean it shouldn't happen. It is of course normal to continue gaining weight into early 20's . Are periods happening normally?

The next thought is what other therapy are they offering for support right now? Have they offered medication? Being fed will help maintain her body and brain function but clearly she has a lot further to go towards recovery. 

I would also like to offer you hope. As long as it seems this has been happening it can take a very long time for normalisation of thinking to occur. With pre-existing OCD this will require extra work to help give her other coping skills other than using her ED. She is very young and time and maturity can lead to many changes. Thinking of you, hang in 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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UKmumof3


Thank you for your reply and all of your thoughts. 

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A few thoughts - is there a reason they are not continuing with weight gain?

They are still continuing with the same feeds at the moment and haven't moved onto a maintenance amount at the moment. I had hoped that her processing would change as she got closer to her healthy weight, but that hasn't been the case at all.

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Another thought is that they are not challenging her not eating
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I agree with this and know that it started whilst on the ED ward. She was not being met with consistency by the staff, saw gaps in their approaches and exploited that to ED's advantage. I have voiced the concerns re consistency on different occasions, and again this morning in the meeting with the new consultant - thankfully, that meeting seemed to show urgency and fully acknowledged the need for firm boundaries and consistency. 

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Rather than insisting that every meal be attempted they are just accepting that she won't eat and avoiding this as a challenge. 

Yes, at the moment this is the case. It is quite early days on the new ward and they are care planning this afternoon, with input from the ED ward. As she has to have a minimum of 2 people holding her for her NG feeds, I believe that they've been not forcing the dining room issue due to the impact all of the resisting has been having on her heart.  But it may well need to be reintroduced as something which has to be done.

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You are probably right that her resistance to having NG feeds may well be about fear of further weight gain, but that doesn't mean it shouldn't happen. It is of course normal to continue gaining weight into early 20's . Are periods happening normally?

I have made it clear to her that she has never been 'allowed' to miss a feed because she's been resisting - that it always going to happen, but something in her just fights constantly. She hasn't started her periods yet, but my other D didn't start until around this age so I don't think they were delayed because of AN, just that she's a late starter.

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The next thought is what other therapy are they offering for support right now? Have they offered medication? 

She's taking Sertraline, Olanzapine and Diazepam at the moment and they are working towards finding the right balance for her. I don't like her being on so much, but I do feel that this new team is properly considering what she needs and making adjustments rather than just throwing everything at her and hoping it works. She also sees their Psychologist and Speech and Language Therapist to try and help with her difficulties communication her needs and how she is feeling. They will assess for ASD once the AN has reduced, but I feel that their were signs of that there pre-AN. I work with uni students with Autism and have qualifications in it, so had suspicions before this demon took hold. The consultant this morning is happy to look at ways of helping her which assume that diagnosis and I think (hope) that will be an important step forward.

We also have Non-Violent Resistance training as parents and have taken part in Multi-Family therapy, as well as individual family therapy sessions. She says that she needs help with dealing with her thoughts, but is very difficult to work with as she just shuts down if she doesn't want to answer a question or doesn't want to think about things. It's really difficult to know what to do or suggest for the best at times/most of the time!

Thanks again x

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deenl
Hi UKmumof3,

It sounds like a very difficult case. It also sounds like you are well on top of things when dealing with the professional team as well as taking advantage of any opportunities to learn new skills. I don't know what else you can do.

I really believe that there is a spectrum of illness with ED from the more straightforward without co-morbids and where refeeding is the only treatment needed to more complex cases where all possible treatments must be tried and even then it may take quite a time before recovery. During that process it is my belief that what you are doing is all that can be done - providing a safe environment, reduce the risks of suicide and self harm, ensure the best nutrition possible, use any meds that can lighten the load, provide therapy in the hopes that something sinks in, provide activities in order to spark some little interest in life, show as much love as is possible and take care of yourself and the rest of your family. This will reduce the physical impact of malnutrition and provide the best environment for ultimate recovery. And I have seen it happen, even with complex cases.

My son was quite ill and was home from school for two full school years so I totally understand how much you want to see progress and to have a clear path to recovery. But rest assured, that even if it takes longer than we wish, it is possible to find the way back to health. My son was about the same age as your daughter is and has just graduated from secondary school and is healthy and happy.

Wishing you 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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UKmumof3
Thank you @deenl, it's really helpful to hear you put it like that. It's just going to be a long road, but I'll continue doing what I'm doing and keeping up the communication with the staff.

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Cat

Hi UKmomof3,

it is the first time I am writing n this forum, but I somehow felt like doing it, probably because I saw a lot of similarities with my daughter (also 13 years old and probably on the autistic spectrum).

I am not offering you any advice what to do, as each child is different and needs different help. However, I would like to tell you my story, as there are many similarities. Maybe, it will give you some hope or ideas what you could do to help your daughter.

My daughter was admitted to an ED ward in December last year (by then 12 years old). Before anorexia ‘broke out’, she was an almost normal, happy teenager, though there were some signs of obsessive and autistic behavior (actually, we had her tested on autism, when she was 6 years old, but were told that she was not autistic, as she was able to make friendships. We have always had our doubts on this negative diagnosis…).

Anorexia started quite suddenly in November 2019, in form of rapid weight loss, with the onset of puberty. Mid December 2019 she was hospitalized in an ED Ward. There she immediately started to copy behavior of other ED-patients, in a competitive way. After about a week, we hardly recognized our daughter anymore: she refused to drink and eat and had become highly suicidal. Soon, she was tube fed, but manipulated the tube very often. In addition, she scratched her arms and legs open and was very, very depressed, and anxious. She could not think rational anymore.

Since she had become highly suicidal and refused tubefeeding, she was soon replaced to the high protective ward, where she stayed for about 6 weeks. It was somehow better for her, as there were no other ED-patients there and there were more personnel to keep an eye on her. Still, even there she managed to harm herself very often. She got medication (Olanzapine): we first saw some improvement (less anxiety), but after a few days, the effect waded away. The only real improvement we saw during her stay on the high protective ward, was that she got rid of the tube feeding. From then on, she got most of her daily calories in form of a liquid astronaut food (which is called Fresubin, here in Germany).

In March this year, the doctors told us she was on a healthy weight, so weight gaining was stopped, and they kept her on a diet of about 2000 calories a day (mostly in form of Fresubin). From then on, the focus was on mental recovery in form of psychotherapy. We had our doubts about this decision, as she could not be reached by any rational argument. The therapy particularly focused on ‘taking responsibility’ and on ‘making the choice to be healthy again’. It did not make any sense to her. The only thing she kept repeating, like a mantra, was that she wanted to be underweight. We also had family therapy, during which the therapist wanted us to find out the reasons that our daughter had developed anorexia. It just did not make any sense to us…

By that time, we did not see any light at the end of the tunnel anymore. We thought we had lost our daughter forever: we feared she would either die or she would remain in mental wards for the rest of her life. As she could not be reached by any rational argument, we really did not understand how psychotherapy was going to help her.

So, we decided to take her home (Mid-March). The doctors and therapist were not amused at all when we told them about this decision and warned us that it was highly irresponsible to do so.

The first 2 months after we took her home were hell. We kept her on the same diet as in the hospital (very difficult, but we somehow managed to let her eat). She did not make any mental progress at all. We had to keep an eye on her 24/7 as she was still suicidal. She was screaming all day, scratching her arms and legs and pleading us to make an end to her life. It was very, very stressful for all of us and very often, we had to call the emergency line of the mental hospital to ask for advise (where they mainly told us to simply bring her back).

We had arranged a therapist nearby, whom she visited twice a week, but she did not respond to the therapy at all. Already after a few weeks the therapist, told us, she did not know what to do anymore. She strongly advised us to send our daughter back to the ED ward of the hospital.

We started reading, on this forum, but also in many, many books about anorexia and discovered that our daughter was not weight-restored at all. We told this to the doctors and therapists of the hospital, but the doctor found it highly irresponsible (even dangerous) to raise her daily calories, because of the suicide danger. The only thing the told us, was that we had to bring her back to the ED ward.  He kept repeating that she was, according to statistics, not underweight anymore, even though we told him many times that her pre-anorexia weight had been much higher…. He even told our daughter herself that she did not have to gain any weight anymore.

Early June we officially quit her therapy, as we had not seen any progress at all. Instead, we radically decided that we wanted our daughter back. We started to raise her daily calories drastically (3000 calories a day), despite extraordinarily strong warnings not to do this from the psychiater of the clinic. We hired an online FBT therapist from abroad and with this support, we managed to let her gain about 0.5 kilo a week.

After only 3 days of 3000 calories a day (mainly consisting of adding fat in form of cream, butter and oil, wherever possible), we saw some very subtle signs of mood improvement and less anxiety. After 1 week her (autistic) brother told us that he had the impression ‘she was doing much better’ and after only 2 weeks, she told us herself that she felt some better. From then on, for the first time in many months, we saw light at the end of the tunnel: though ED thoughts are still present, she is increasingly more able to cope with these thoughts and is making great mental and physical progress. She even told us last week that she simply feels happy again and that she is not depressed any more. She also started to work on all kind of hobbies and last week, she even went some hours to school.

She is still on the way of recovery and I know we have to be patient, as it will probably take a long time to recover fully. However, when we compare her mental and physical status with her status of only 7 weeks ago, the difference is very, very impressive. As she is still not weight restored right now (still a few kilos ahead of us), we only expect her to become even better. But even already now, we have our daughter back, though she is still ill and will need a lot of support from us in future times. Still, she is no longer the ‘monster’ we did not recognize anymore. Even the psychiater told us 2 weeks ago that he was extremely impressed by her mental and phsyical recovery (although the clinic officially still does not support rapid weight gain…).

In our case, we ‘simply’ listened to our parental instinct: both the therapy in the hospital as well as the therapy that she got when she got home, did not bring any progress at all (rather the opposite). It just did not make any sense to us.

Back to your daughter: I am not sure if my story can help you. But the main question I want to ask you is: are you sure she is weight restored? Are you sure she gets enough food (especially fat; My daughter still needs a lot of fat…)? I found it amazing what a great difference it made, when we increased her diet to 3000 calories a day, a large part of it being in form of butter, cream, and oil

I know what you are going through, and I wish you all the best to find a way to help your daughter. Please take care of yourself as well and do not give up hope. There will be light at the end of the tunnel.

 

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deenl
Thank you so much for sharing your wonderful story. Your courage shines through because I have no doubt that it was scary going against medical advice on top of your fears for your daughter. Your love and determination to accept nothing less than full nutritional rehabilitation for your daughter also shines through. I am sure you are savouring many simple day to day signs of recovery in your daughter. We don't take them for granted any more and seeing a laugh, a new step towards independence, a 'tiny' hurdle overcome, a conversation with a friend, these are the types of rewards we get for the struggle.

Deep respect to you and your family and thank you again,

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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UKmumof3
Hi @Cat and thank  you so much for sharing your story. It has been really helpful for me to read what you've been (and are still) going through and to see all the similarities with my daughter. 

I spoke with staff this morning when I visited and they said that they were reviewing her diet plan this week, but had been considering keeping the increases going so that she is at the top range of her weight to height range. I have asked them to definitely continue with it and cited your story especially as a reason why. The ED ward she was on have an expected weight gain of 1kg per week, and when that is not met the diet is increased. My D went for a number of weeks where she floated around the same weight because the exercise was outweighing the intake, but they reached a point one week where she actually increased by 1.4kg. They are not going to have the same expectations of  her now, but I'm encouraged to know that they are happy to continue with weight gain.

Unfortunately, one of the huge issues is that this is all purely NG tube fed - they use Fortisip in the UK. They are now tackling the issues of entering the dining room just to have water and that is the current battle to fight. 

Thank you again so much for reaching out and I'm happy to read that things are progressing well for you x
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