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keepsmiling

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Reply with quote  #1 
I really need some advice right now please as I am so confused and not sure what to do for the best.  For those of you who don't know me, my D was diagnosed with AN December 2015 at 16 and started seeing our ED team in February of 2016 - she had refused to attend up to that point.  She is now 17, 5'7" and at her lowest was 44.4 kilos.  I took leave of absence from my job to care for her and wanted to see fairly raid weight gain but D refused most increases so it was painfully slow.  We kept being told she needed to go IP but because she wouldn't go voluntarily and they didn't want to section her (we are in the UK) nothing ever happened and we just kept plodding on at home.  D eats everything on her meal plan but not an ounce more.  We are ruled by timings, meal choices (very limited) and all the other rules and regulations that come with AN.  Almost 18 months later and D weighs 47 kilos.  She was at 48.4 but lost recently due to a stomach bug but prior to that she had been at just slightly over 48 kilos for months and months.  Of course, since losing the weight she is unable to gain it back as she doesn't eat enough to gain, though today she has agreed to put in an extra glass of fruit juice with her tea :/  
After 6 months off work with her I had to return to work and H took time out to carry on but with the same results as me - no weight gain, just stable.  He returned to work in Feb this year and I have to come home to eat her lunch with her or she won't eat.  D has been out of school since Feb 2016 but the hope is that she returns to school to start her A levels this autumn.

D sees a therapist once a week but T believes D should work on mental recovery and does not believe that D should be forced to gain weight at this stage, that she is too vulnerable.  

Today we had a meeting with myself, H, D, T and an ED nurse.  H and I had agreed that D needs to gain at about 0.5 kilos per week and that increases need to happen as we cannot stay like this forever and that if D does not agree to this then we will stop our part in her care - I won't get her breakfast ready, come home for lunch or give her evening snack to her.  This might force D to agree to increases and weight gain, or else it might force people to finally put D into hospital as her weight will plummet.  However, T and the nurse both said that we couldn't just withdraw care, that D needs warning and that they will have to help her cope with our withdrawal so that she can avoid hospital.  They told us that we need to give D the chance to talk to her T next week so that they can discuss what support D can get to help her when we stop, thus meaning that she can continue staying at the same weight and not gaining but also avoiding hospital too.  What do we do now?  We honestly cannot leave D at this weight for the rest of her life - although she is medically stable at the moment, that could so easily change plus she has no life to speak of at the moment.  It just isn't what we want for our D but how do we change things when T and the ED nurse aren't supporting us, they are encouraging D to 'manage'.  

Sorry for the long post.  
NELLY_UK

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Reply with quote  #2 
Sounds like you need a therapist that insists on weight gain as the immediate priority. Therapists never do in my experience. Can you get a dietician on board and give the therapist a break? When the clinicians go against you they will damage whatever influence you have. You need to be respected and valued by your d and her team.
Makes me mad. You clearly know whats best- weight gain.
I urge you not to let her fail and get to hospital admission state. That may not happen and she will be much much worse.
Get rid of anyone that says she doesnt need to focus on weight gain. Bad therapy is much worse than no therapy.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #3 
Thanks NellyUK, I agree that a different therapist might be a good idea but D is very attached to this one (sometimes I think too close :/) and I think if we suggested it change D would refuse - D tells us that as she is 17 she gets to choose anyway and we don't.  I just don't know what to do any more.  If we continue doing everything we are doing for D at the moment then she will just stay as she is so how do we force weight gain?  If we put in increases D refuses them and T tells us off as they hadn't been agreed - we just can't win.  Sorry, I just feel so lost right now.
OneToughMomma

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Reply with quote  #4 
Dear keep smiling,

You and your d have really really been let down by the system.

Who pays for the therapist? Who gets d to the appointments?

A big hug to you,

xoOTM

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

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Reply with quote  #5 
Hi keepsmiling,

I just read back on your old posts to refresh.

I know its not what you want to hear, but withdrawing support and meals sounds like a really, really bad idea to me.
I hear your frustration and upset, but I think that could make things worse, IMHO.

Given your Daughter is going to be 18 later this year, I would advise you to take action and work quickly.

I am guessing your D is in CAMHS, Could you call them tomorrow to complain and demand action,and make a FORMAL complaint in writing to follow it up.
Could you email them this video below in advance...

Can you insist on more suipport and intervention or IP?
Can they get the ball rolling to start the paperwork to section her??
Something needs to be done urgently. Have her vitals been checked lately?

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
NELLY_UK

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Reply with quote  #6 
Of course your d is attached to this therapist! The therapist is colluding with the illness, undermining you , the sensible voice of reason. You are well informed and this is whats known as 'bunkam and woo' as identified and named by Laura and charlotte in their book Throwing Starfish into the sea. These two parent advocates for eating disorders nailed it right there.
This therapist will remove you from your daughters care if she continues to go against what you are trying to do which is treat the symptoms of AN.
FOOD IS MEDICINE!
No amount of therapy will help achieve what you are doing- feeding your sick daughter. The sooner your d gets the message from all clinicians that she has to gain more weight, quicker, the better for you all. You are her parents, you live with it, you will be there loooong after the therapist has gone.
You need to be brave.
Get a team that are better informed about treating AN, you absolutely must whether she likes it or not.
Dont get to a place where your d is more incontrol than you because the therapist says so. It will end badly.
Keep feeding her. Sneak in calories where you can.
This therapist sounds like she is planting doubt in your minds that you can succeed. That gives the ED the upper hand.
Really, others will add their thoughts I hope, but our lives got better by miles when the bad therapist was ditched even though there was nothing else better available. The confusion lessened. Unfortunately we left it too long before we found this place and became educated in all things ED.
Have confidence in yourselves and make weight gain the priority, therapy can wait.
Thats all.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Foodsupport_AUS

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Reply with quote  #7 
I am so sorry to hear that yet again someone is being let down by the very people that are meant to be helping you. 

I too would be very wary of a plan that gives ED the upper hand, as much as it feels that nothing is happening when you are there insisting she eat, you are giving her a strong message that she needs to eat and that she is worth it. Dropping your support as you say is likely to result in her losing weight but given the dire state of ED services in the UK with very limited bed options, most of them requiring critically low BMI for a guaranteed admission, I would not take the gamble that they will come to your aid. 

If you can change therapists that would be great, therapists that collude with ED are very dangerous. 

It took four years for my D to be able to eat a bite of food that was not required or supervised. We have had a long course, she has now been sick for seven years. We did manage weight restoration on two occasions but then crises would intervene and it would drop again. It seems to take an age, but your insistence on food is not useless. It is keeping her safe from the serious physical consequences of her illness, please keep pushing. 


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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Kali

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Reply with quote  #8 
Hi Keepsmiling,

This sounds very difficult. 
I would be frightened to withdraw support. IMHO that will only empower the eating disorder and your daughter's health may be further jeopardized.

If she cannot gain at home—and you and your family have really done a herculean effort to try and make it happen—can you look into residential treatment for her? Certainly, there needs to be a change but maybe it needs to be more supervision not less. I can hear how frustrated you are. Why take the risk her deteriorating further? Why not just insist on a higher level of care now, even if it means having her sectioned?

I was not able to refeed my d. at home and she went to a RTC for nearly 3 months. She was weight restored there and had effective therapy. She was not "cured" when she came home but I think it saved her life. It was just the beginning of making progress against the illness. 

Quote:
D sees a therapist once a week but T believes D should work on mental recovery and does not believe that D should be forced to gain weight at this stage, that she is too vulnerable.


Here is the thing about drs. and therapists: They are only human and they are not always right. You know that your d. needs to gain that weight and it is counterproductive for the therapist to be saying otherwise. Her best chance of recovery would be to gain the weight AND to have the appropriate therapeutic help supporting her to do that. Have you discussed that with the therapist? IMO as parents, we are the "project managers" of recovery—the team is working for you and your d. If you are not seeing improvement after so long, what things can you work to change about her treatment either collaboratively with the team or with a new team?  

Sorry, this is so difficult. I hope things will get better for your d. and your family.

Kali 



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NELLY_UK

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Reply with quote  #9 
Hi again, we do not have residential treatment here in the UK, sadly.
You may not even get the option of a therapist who understands EDs as was my experience. Yes you can complain, but it may take over a year for a response as my complaint did. All the while our treatment team colluded with the illness, undermined the whole family, effectively blaming us for a failed recovery.
I hope you can get better help and support but dont bank on it.
Be prepared to drive the treatment yourself. Dont expect the right help, work as if it wasnt there and then if it is, thats great, but if not, your d hasnt deteriorated meanwhile.
If your d is functioning at any level normally ie at college or work, she will not be sectioned. Should she deteriorate then a bed has to be found within 24 hours of being sectioned. There are few and far ED beds in the uk, therefore we return to the faulty BMI rule that still prevails in the UK.
I really hope you are in an area where there are good ED services. Then my bleak view point will be irrelevant.
I hope you and H can go for it and help your d. You will get LOADS of support from here. She really needs you to help her.
X

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #10 
Thank you all for your replies, it has really helped us clarify what we need to do next.

OneToughMamma - the therapist is part of CAMHS so comes under the NHS and we used to drive D to the appointments but D and T decided they would rather meet in town (they tend to sit on a bench in a shopping centre) D now gets herself there by train.  It is not ideal and one part of the conversation yesterday was about the fact that we are never allowed to even speak to T about D as she is there purely to help D, so information is not getting passed onto us.  They decide what is best for D and D is supposed to pass their decisions on to us.  The ED Nurse has become involved to try to mediate between us so that anything we think and is passed to T via the nurse and vice versa!!

ToothFairy & everyone else - we agree completely that we are running out of time for D before she hits adult services which is why we are so desperate.  Talking to H last night we have agreed that withdrawing care is not an option (We kind of knew it wasn't the right road to take but are so desperate for change).  D has her meting with T to discuss everything next week so we will wait and see if T makes D see she has to gain weight.  If not, we will start to complain and get things rolling for either IP, if D qualifies, or at the very least a complete change of team around D.

D's current BMI is 16.3 - does anyone know if that is low enough for sectioning in the UK?  I know she is below 80% weight for height, has made no progress really in 18 months and does not attend school, work or do anything else.  Her mood is actually very good though but this is mostly because the ED is currently getting everything it wants and does change when challenged.

I feel far more positive than I did last night, there is a plan to get help in one way or another and we will keep fighting the ED with or without the Services support so thanks everyone.  We still have a very long road to go down but know it will be worth it.
cjac16

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Reply with quote  #11 
Hi Keepsmiling.  My D was around 48kg when she was told by the consultant that if she had not put any weight on by the next week she was looking at spending six months in hospital (six months being the average time at the moment apparently).  She is 5' 7" too.  She had previously been in hospital to have her low heart rate checked out and the doctor there asked why she was not an inpatient.  I think you D would very possibly qualify for inpatient care, particularly as there has been very little improvement with weight.  D's first therapist was useless in my opinion - very sweet but more "tea and sympathy"type.  The next one we had was absolutely brilliant.  Perhaps you need to ask for another therapist.  Hope things start to improve really soon.
Kali

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Reply with quote  #12 

Hi Keepsmiling,

Are you able to phone some of the ED units which are in the UK directly and describe how your daughter is doing: low weight, no gain in 18 months, she is not able to attend school, family is exhausted, you are seeing no improvement even though she is in therapy, and because of these issues, ask them if she can go inpatient? Does she purge? Find out what all the options are.

I totally get it our d. was also 17 when things were very bad.

Also, how are you doing the weight gain at home? Are you able to use lots of butter, heavy cream and oils when cooking for d? Does she stay out of the kitchen while you are preparing the food? Do you think it might help for you and h. to see a nutritionist on your own without d. and create a weight gain menu? Or do some research online and come up with one? I consulted about that with someone at one point and found it helpful to be really well versed in nutrition. Are you able to add supplemental drinks such fortsips? (two a day, one for morning snack and one for afternoon snack has worked well for us) One of the hardest but very important things is to work up to a reasonable variety of different foods that she will eat. How can you add at least 500 extra calories about what she is eating today to her menu each day? That would be a 1kg weight gain a week. There is also a product called benecalorie which can be added to some of the food, it works especially well in spaghetti sauce and you can't even taste it and one container has 350 calories. 

And finally with this age group motivation can help...are there things that your d. looks forward to in her future?


Kali


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toothfairy

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Reply with quote  #13 
Hi there,
Surely the CAMHS therapist has to answer to somebody?
I know it may take a long time for NHS to answer a complaint, but could you not write to the psych in charge of your daughters case locally and demand immefiate answers?
Demand a referral to an ED unit.

Regardless it really sounds like is time to move on to a different strategy.
Brainstorming here,

Have you ever thought about taking her to the USA to the UCSD programme..
Or
Have you thought about. Contacting Eva Musby or Maudsley parents or Tabitha Farrar? They do private consultations.
Or
Somebody like Therese Waterhous via skype
http://www.willamettenutritionsource.com/therese-waterhous-experience.htm
Or
Have you read Laura Collins book "eating with your anorexic" it may help you at this stage.
Or
Laura Collins does mentoring private sessions, Maybe you coukd give it a shot

http://www.circummensam.com/services.html

Just rhrowing out ideas to help you move forward,
Best wishes
T

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
sk8r31

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Reply with quote  #14 
I agree with others that you need to 'change the channel' now in terms of your current situation.

TF has given you some great ideas to consider.  I think any one of those suggestions could really help to move your family forward.

I can speak to a couple of those ideas.  My h & I took our then-17-year-old daughter to the UCSD 5 Day Family Intensive program, and it was a lifesaver.  At that point, our d had been ill for 3 years, and we had not had good therapeutic or medical support during that time....in fact, the T and RD were very counterproductive, telling our d that 'her dad caused her illness' (he is anxious) and that FBT would never work for our family.

We also consulted via phone with RD Therese Waterhous a year after WR, and before our d left for university, as part of putting together a strong safety net.  Therese is very skilled at working with the ED population and in particular young adults.

Joining in on a coffee chat via phone this coming month with Laura Collins and other supportive parents would also be beneficial.

There is also the carer's half-day conference taking place within a month or so in London, with some of the best parent advocates and FEAST board members from around the world.  They are all brilliant.

Sending you strength & support as you navigate next steps.

sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
NELLY_UK

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Reply with quote  #15 
I requested a referral to the maudsley for a second opinion. That was worth it even though it took 4 mobths ish.
Your team like ours are working in the dark ages. Excluding the family from the treatment plan. You should be the heart and soul of it as her carers.
Start hassling them daily, camhs, scream shout write emails with her alarming bmi, give them evidence and demand a response, cc your mp in and also PaLS. Check out the marsipan guidelines for current list of risk factors for admission. Although our lot ignored the worst indicators. Also at 17 admission without a section is voluntary. Uggh

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #16 
Thank you so much for all your replies, I am overwhelmed and so grateful.

cjac16 - thanks for your thoughts on IP, we are going to look into it as I also thought that at her weight and having had virtually no progress in nearly 18 months she might qualify.  

Kali - D checks on everything we prepare and will refuse if she even thinks we have added anything extra so adding anything would be very difficult.  Thankfully she doesn't purge which certainly makes things easier than a lot of people have to deal with.  She already has two fortijuice a day as part of her snacks, alongside 20g of dried cranberries each time too.  Her motivation seems non-existant, although she does have a dog now - we bought her a puppy when she was really low to try to help motivate her and it worked.  Since she dropped back down so low again we have not let her walk her dog, she knows she has to be at a higher weight to be able to do that but even then it doesn't motivate her enough.  Other than that she crochets, an activity we introduced at the start to give her something sedentary to do.  She has become addicted to it and is extremely talented - she is now selling on Etsy as well as designing her own patterns that she sells to magazines across the World, but again it would be hard to take that away from her as it is so sedentary.  Apart from those two things she doesn't do anything :/

Toothfairy & sk8r31- we would love to take her to the US but just do not have the funds so that isn't an option, however we will certainly be investigating all your other suggestions so thank you.

NellyUK - I have considered asking for an opinion from the Maudsley but just wasn't sure if I could / should.  However, we are now gaining the strength to challenge the current treatment and intend being that squeaky wheel.

D had her bloods done yesterday so we are awaiting the results of those but they haven't checked anything else for a long time - another thing we will query.  Once again though, so far D has remained stable in everything :/


melstevUK

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Reply with quote  #17 
keepsmiling,


The person who has ultimate responsibility for your d's care is the consultant psychiatrist.  Not the therapist, not the nurse, not a dietician, not a psychologist.  It is always a psychiatrist, and usually at consultant psychiatrist who determines what people/resources are deployed.

I advise you to make an appointment to discuss your d's care.  Phone the secretary and ensure she knows that you wish to come and see the psychiatrist with a view to complaining and also with a view how best to make improvements to your d's care.

The therapist is poison and behind the times.  If you do not feel able to do this in person - please write.  But ultimately you need a meeting face to face and to prepare yourself for what you want to say.  Take your h with you because men are nearly always taken more seriously in many situations - we are still behind the times everywhere when it comes to this subtle prejudice and who is given power.  If your h can do the talking - even better.

You have the right to kick up a real fuss here - your d has been on their books for eighteen months and made absolutely no progress.  Do not allow anyone to fob you off.  
You should have been offered FBT - this is nothing like it and the psych needs to know that you understand treatment options.

You also need to be quite open with your d - you might not be able to get her to accept eating more without the support of the clinicians but there is nothing to stop you reminding her that she is ILL.  And I would keep on using that word ILL to justify your absolute refusal to back off or do nothing. Even if you cannot get her eating more - it will do no harm to tell her that you know that she is not choosing to be ill but she is being let down by the system because noone is insisting she gains weight.  Tell her straight that there will be no recovery without weight gain, however difficult it is for her to accept this.  Offer your support in helping her get things moving but do not let her think that you are being unreasonable or lacking in understanding.

If you can get the psych on board - you may get more support on the ground in getting weight gain put to the front of the agenda.  If nothing happens over the next few weeks, ask for an IP placement.  You could try telling d that either she will have to learn to eat more at home or in IP but that you are not going to stand back watching the next few years go by with no progress.

But the first port of call needs to be the psychiatrist.  All you need to do is phone the hospital and ask for an appointment.  If for whatever reason you do not know the name of the psychiatrist, the secretary should be able to tell you. 

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mjkz

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Reply with quote  #18 
You got some really great advice here.  Maybe rather than withdrawing your support around eating, you make your support around other things conditional to weight gain. If she is not working, then she is relying on you for a lot of things. Someone is buying her yarn and cell phone, etc.  As hard as it may be, you might need to make buying those extras or paying for them conditional on weight gain.
Trytrytry

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Reply with quote  #19 
Sorry I haven't read all the replies but since when does someone dictate to you how to parent your child, (especially when she is 18?)
It sounds like the therapist is a hinderance to recovery.

And I would question their professionalism, another way of stating what they propose seems to be - aim of the treatment is to try and stay sick, at an unhealthy weight, that is dangerously low but just high enough to keep you from being in hospital (where she would be in a world of infinite funding).

I think you have made a good decision, you are not kicking her out of home to live on the streets. You are letting her try to live as an adult and take the consequences of losing weight and hospital - it is costing you money in lost wages to care for her, the treatment plan seems ineffective and if she continues she will spend her life in care and not much of a future. You have done tremendously getting her this far and doing your part but there is a point where you have to admit defeat and change tactics.


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NELLY_UK

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Reply with quote  #20 
Loving the feisty Feasties who know SO MUCH! X
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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #21 
Well, yesterday we told D that we are not giving up on her, that we are going to fight her illness and work together (H & I - and her if she wants / can be involved).  We had agreed that no changes would be made until she has had a chance to meet with T but T has also been told of our strong feelings about weight gain being the most important thing here so as of Wednesday next week D will have her food increased by us to try to get some gains.  D's immediate response was that she won't have them, which is what we expected, but they will be going in anyway and we will do our best to get them into her.  

We have also got an appointment with the consultant in two weeks time but think that she will support weight gain being most important and help us in any way she can.  Hospital care will also be discussed at that time.

We know it is going to be incredibly tough for D to accept the change in how we try to get her to eat and that we are going to take complete control regardless of anything T says but she also knows we love her and we make sure we tell her lots every day.  She hates us calling her ill or anorexic but we are using those terms more and more and stressing that we want her well, that we want her to have a life and that we are going to fight very, very hard to get her what she deserves.  Deep down she knows she is ill and I would even go so far as to say that underneath it all there is my D fighting to get out, but the AN has such control over her that she just can't do it, which is why we are doing it for her.  Full-blown FBT here we come!!
deenl

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Reply with quote  #22 
I love to hear psyched up parents.

Remember that your daughter is petrified in a way few of us can truly appreciate. And the ED will be mercilessly cruel. She may be driven to extreme behaviour or she may not. But be prepared.

I found scenario planning with my husband very helpful. Eva Musby's book is really helpful in this regard.

In terms of practical tips - clear your diary, if the dietician has not given a trustworthy plan work one out for yourself(kartini plan is a good base and there are free calorie counting apps) get some meals into the freezer, search the forum for distraction idea and get a box of them ready, and learn the signs of purging and put steps in place to prevent it.

Anyone else got some good tips?

Warm wishes and
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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
melstevUK

Caregiver
Registered:
Posts: 2,595
Reply with quote  #23 
keepsmiling,

Well done.  It sounds like you have a plan now.  When we cannot get food going in and weight gain going at home - we have to find other areas where we can be strong.  Your d is still very young.  It is worth telling her that it will get easier as her brain matures over the next few years and once she starts accepting the routine of eating more.

Once this illness takes a hold it usually means fighting it into the early twenties to get a fully sustained recovery because the child/patient has to move through all the adolescent changes into adulthood, and the last part of the brain to develop are the frontal lobes, which are responsible for planning for the future.  

It has taken my d ten years to achieve a solid recovery - I can't believe the difference in her.  She now has a womanly body - which is really amazing to see after seeing her waif-like for so long.  But she says she is happier than she has ever been since she became ill and she really wants nothing more to do with being anorexic.  

It is scary to think of such a long haul journey - but it means we can be prepared and hopeful even when there are stops and starts along the way.  And it doesn't all have to be a tragic and unhappy journey - pleasant times can still happen in spite of a protracted recovery period.  

It's a marathon and not a sprint.  So very true.  

__________________
Believe you can and you're halfway there.
Theodore Roosevelt.
kayjay

Caregiver
Registered:
Posts: 80
Reply with quote  #24 
Failure of outpatient care is on the list of criteria for hospital admission, and given your timescales and the fact that research shows that rapid weight restoration leads to better long term outcomes, i would be asking for a referral for assessment elsewhere.

No one wants their child in hospital, but sometimes it's the best way to help them get their life back, not some half existence of calories and crochet. Nothing against crochet, but at 16/17 they should be having a 'bigger' life.

Kx

__________________
D, 16, diagnosed with AN Aug 2016. One day at a time...
deenl

Moderator
Registered:
Posts: 882
Reply with quote  #25 
When I added extra oil etc to his food I began with just a teaspoon and very gradually increased.

I think it's a great idea to continue exploring all options as inpatient may be needed. The more options and plans you have the better you can respond to any eventuality.

__________________
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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
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