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

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saltpot2363
Hi, my eldest daughter started out with anorexia 9 years ago (28yrs old, am in UK). Was re-diagnosed last year with BDP and and ED as a secondary diagnosis. She is currently completing DBT treatment and has advocated all along that she also needs bespoke ED support too- the team say this is the only treatment available and that it treats the ED too. She has found many of the DBT  techniques helpful in everyday life but says she needs an ed specialist to talk to/dietician.

She goes from bingeing to restricting. Just before starting DBT she was bulimic for months and one day she flipped overnight - going to restricting- they think she's doing so well as she kicked the bingeing in to touch until now. Group rules for attending DBT sessions are if you have self harmed then you cannot attend the group - much of which is visible self harm yet she was still able to attend even though restricting- though this is not so evident. That's why they were saying she is doing well- as on top of the bingeing-this is a flaw in the treatment plain for me.

She is now struggling again with bingeing- and is asking for more help- specialist ed input/ dietician yet they are offering nothing additional. It is great that she can now ask for help- it has taken her a long time just to do this. Last  time she took over doses and ended up in the local crisis service for 4 months ( this is just a holding ground).

It seems we just have to wait for her to get worse before she gets more help which is so frustrating. She is just about to relapse. Does  anyone know of any research around treating both the eating disorder and personality disorder - if we had something evidence based we would be able to advocate better for treating both diagnoses simultaneously? Thanks Julie
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deenl
Hi Saltpot,

What an incredibly long struggle you guys have had. It makes me very sad that the treatment you need is not easily available. I have not experience personally with the combination of ED/BPD but I really love this book - Overcoming Borderline Personality Disorder by Valerie Porr. It has an up-to-date explanation of the illness and evidence based therapies but, most importantly, it has very helpful ideas for parents and siblings to help manage the environment and make it more conducive to recovery (or more stability at least!), how to manage outbursts of emotional dysregulation and how to practice self-care. Unfortunately, it does not deal with co-morbid diagnoses but DBT is evidence based for both EDs and BPD. Is the DBT course accredited? And does she have a personal DBT therapist and phone support for practicing skills in times of crisis? Perhaps with more support and more time things will improve. I hope so.

Sending you even more strength and courage (you must have lots already!)

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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Foodsupport_AUS
Hi Saltpot2363 I am sorry that your daughter continues to suffer. I suspect research evidence for treating both disorders at the same time is limited. This article talks about the frequency of co-occurence of BPD and eating disorders. https://www.verywellmind.com/eating-disorders-and-borderline-personality-425424 This guideline from Australia certainly recommends it, but it is a consensus based recommendation. https://bpdfoundation.org.au/images/mh25_borderline_personality_guideline.pdf
 See page 88.
Lucene Wisniewski has a special interest in treating both together, but is in the US. 
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.
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melstevUK
Saltpot2363,
I am actually raging on your behalf. Giving a diagnosis of BPD when there is an active ed present is a worrying trend in England right now and is not doing patients any favours as it totally removes the focus from nutrition. 
As I see it there is a funding issue rumbling in the background and also a bucking responsibility by ed clinicians when they find some patients difficult to treat - the issue being that a patient cannot be under both ed services and general mental health services at the same time .
However, your d can be referred to a community dietitian and if she gets a nice one should be able to get good support from her/him (never known a male dietitian!). 
My d was making good progress with a community dietitian who,by unfortunately for us, went in maternity leave.  The GP can refer her. It is worth a try .
Believe you can and you're halfway there.
Theodore Roosevelt.
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tina72
I would like to add that it might be helpful to check the community dietitian ALONE first to see if she has knowledge in how to make people gain weight and that she will not talk about "healthy food" or ask your d to restrict any food.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Good idea Tina72.  D will have to give permission for her mum to speak to the dietitian though, as she is over 18.  Although if the d explains that she has an ed and needs help putting on weight the dietitian will work with her to that end.
Believe you can and you're halfway there.
Theodore Roosevelt.
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mjkz
I'm with Mel on this one.  It seriously angers me that in the face of an active eating disorder anyone should get a personality disorder diagnosis. It just seems to be to be a way to explain away and excuse the clinicians when treatment doesn't work.
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melstevUK
Absolutely mjkz - it is a nasty form of patient-blaming but clinicians won't see it that way.
Believe you can and you're halfway there.
Theodore Roosevelt.
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novo_UK
I'm afraid I have a terrible tale to relate on this score..ie clinicians giving up on seemingly intractable ed patients and shifting the blame for their inability to treat onto other psychiatric centres to deal with BPD. This happened to my daughter and she ended up not eating after the transfer for over a week and losing her small intestine after having to be be refed in the ITU under sedation. Now struggling with the (of course) still relentless and unresolved ed and now with the double whammy of Short Bowel Syndrome...which means fats, in particular, are difficult to absorb. Huge implications for a sufferer of anorexia, naturally. Do NOT be fobbed off by ed services trying to insist the ed is secondary to BPD - both of which share many characteristics anyway. Escalate your concerns upwards, as high as you can
Cygnet in Coventry are supposed to be an inpatient centre which treats both illnesses as a dual diagnosis but I cannot recommend their service from what I have heard/read.
'You live in a concrete house, you no fear da hurricane'  Jamaican proverb
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deenl
What a devastating failure on the behalf of the treatment teams. I am so sorry for all the pain that you, your daughter and all your friends and family must have and still be going through. If you feel like it, please feel free to start a thread for yourself to vent, brainstorm or simply grieve for the sad events that have happened to you. We are here for you whenever you feel ready.

Wishing continued strength and courage to you,

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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melstevUK
novo_UK,

I am utterly devastated by your story and raging at the way your d was treated.   It disgusts me and moving 'difficult' ed patients onto mental health services with a BPD diagnosis seems to be happening a lot.  I hope your d can get compensation at some stage but you all probably feel too lacking in energy to even think about that.
I am so sorry for the pain and hell your d has been through - I hope she can get kinder and gentler and genuinely caring and supportive clinicians who will bring hope and confidence to you both.  
Thank you for being brave enough to share.  As deenl says, if we can help at all, please post separately.
Believe you can and you're halfway there.
Theodore Roosevelt.
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