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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admum
Hi. My D 15 was DX EDNOS at the beginning of the year. She had been purging regularly and that is under control. When I discovered her restricting and purging diary in December 2015 I found this site and started refeeding. We were lucky as she didn't lose a lot of weight. She has been having CBT since Feb . She still has an eating disorder but allows us control of her eating . I am sure if we were not vigilant she would restrict.

A short while after the DX she became a school refuser. Was DX as depressed. Put on anti dos which have helped a little. School were pretty useless .We got no support. She managed nonetheless to pass 4 GCSEs in year 10 and get fantastic

She has now been DX as having body dysmorphia. She will hopefully remain under both the ED and BDD team. Her BDD is about multiple issues. I was always convinced that she had BDD as it wasn't just about weight and size. I read the book the Broken Mirror by K Phillips and realised how it fitted my D

We are waiting to hear how treatment will proceed. She accepts she needs help. I just wondered if any other parents had children with a dual DX . perhaps I need to join a BDD forum.







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Psycho_Mom
Hi,

Well, body dysmorphia is a common if not nearly universal symptom of restrictive eating disorder. Most parents here I think have had to deal with ed and with bd. I would question why your team or teams would consider it a separate issue, and I would question whether treating it as a separate issue, when bd is likely to be a symptom of the ed issue, would be effective.

It is often the case that body dysmorphia issues go gradually away in the year after full wr. This was the case with my d, who had not only incorrect perceptions about her size, but also about her face, her acne, her height. Therefore I think the very best treatment for ed and for body dysmophia is full wr and maintaining full wr despite growth, and letting the brain heal. And then, if there are still dysmorphia issues long after full wr and brain healing, it would makes some sense to call the dysmorphia a separate diagnosis instead of a symptom.

So. Is your d fully wr?  Please be aware that many clinicians set weight range goals too low, and/or do not keep raising them, as necessary, as the patient grows. 

Sorry if that's not the answer you were looking for. I'm sure more responses will come along shortly. Feel free to take what is useful to you and leave the rest.

best wishes,


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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AUSSIEedfamily
Dear admum,

There are often comorbids that develop with an ED & the difficult part is to discover whether the comorbid was there pre-ED or it was a symptom of the ED.. There are some clinicians who see the comorbid as the primary one to be treated & then treat the ed.

My thoughts would be to continue with the ED work at the same time as the BD work. As Psychomum identified that when full nutrition & weight/body restoration is sustained for a long period of time healing of the ED & the comorbids is often the result.

This was one of the topics I have talked about to the clinicians I am in contact with & its one of the things they are looking for to work out which came first so they can match the treatment up to the patient & often they treat both at the same time.
ED Dad
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admum
Thank you both. I too have had doubts about this. It's so hard. My d was purging several times a day when I discovered her diary in December 2015. I knew immediately that had to be stopped and help found. I was also aware of the link between ED and ASD. Now with vigilance the purging is rare. Still happens usually when she is away from me but only a handful of times in last few months. Her weight now is same as was Jan 2015 and she hasn't grown. We saw a paediatrician from the ED team who said she wasn't expected to grow given when started period/menses. I tried to talk about weight not state but got no where. Her bmi is now around 22 and has been since diagnosis. Weight has gone up and down by few kilos but nothing they worry about. She looks slimmer and shape has changed. My d was v athletic. Used to swim for a team. Play football. Basketball . Rollerblade to school etc but that all stopped be cause of her BDD. She is now a size 6 to 8 uk but could be a 4 in some makes. I know this isn't small for many on here. I worry that she has stayed at same height for 18 months and paed says that's ok.
But I do know that her BDD symptoms started before ED according to her. As she is Also ASD it is difficult to differentiate. She had lots of sensory issues with clothes so I thought her constantly changing clothes and refusal was that but now realise it was probably also BDD. Hey we have a wardrobe of clothes she can't and doesn't wear. As the treating teams are leading uk teams I know they don't diagnose lightly and we are lucky to have access to both at the same time.

Her BDD isn't just about weight and size but also so many body parts and her hair even her eyebrows . It is what has stopped her going to school for months and affects her do much on a daily basis. Stopped her taking part in any sport and even being able to walk to school or around her school or into a classroom.


Chicken and egg .

I feel they need to treat BDD but insist on keeping on working on ed issues of purging and restricting. She needs to develop an appropriate relationship with food etc. I have no idea if she will be capable of walking into a classroom when required. If she can't I have to reassess and look for alternatives.





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admum
I am uk based do sizes are uk sizes.
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Psycho_Mom
Hmmmm.....have you done a full historic growth chart? I know that's harder in UK, but perhaps with looking up old records, old letters, old photos, it could be done? Because to me it sounds like there are very strong indications that your d's weight isn't high enough.

First and foremost, normal teenage girls continue to gain weight well after they stop gaining in height.

https://www.cdc.gov/growthcharts/data/set1clinical/cj41c022.pdf

Your clinician should know this. I fail to see how clinicians can so often ignore this very, very, very simple, very very well accepted, proven, standard information. If your d hasn't gained in the past year then she is very veyr very very very very likely to now be underweight!~!!! Normal teenage girls keep gaining weight well into their 20's, well past height gain. It has to do with maturation and bone density.

BMI 22 sounds good, but ONLY if BMI 22 is where your d's body is intended to be. Even if you don't have a complete growth chart for your d, if she's been at BMI 22 since diagnosis, and it's been a year and she's still suffering, then O.M.G. I'd raise the weight and see what happens. (I'd also throw donuts at my doctor's head and tell him or her to oh gosh maybe read some research from this century, but that's just me.....)

Looking back, I can see that my d had some symptoms of ed at age 9. She didn't really lose much weight and wasn't diagnosed until age 15. With a long time of full weight restoration, all those symptoms have gone away (anxiety remaining a thing to watch out for, always.....) So yes, I understand how confusing it is to try and figure out what came first. I think actually that you have to give up on trying. IT doesn't matter. The question is, will increasing weight help your d? There is really only one way to find out. 

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Torie
Hi admum - Congratulations on the progress you and your d have made! It's awesome that you caught this early and found the forum and are working to help your d regain her health.

It's so hard to sort out how much is this and how much is that and how many different challenges are we even talking about. 

For my d, I think the BDD and self-loathing came first, then cutting, with restricting being the last of the package to arrive on the scene. I really wondered, then, how much it would help to get her wr, since she had been perfectly miserable at a good weight in the beginning. But I also knew that, without wr, there was no hope of getting my real d back so off we went putting on the weight. 

My d needed CONSIDERABLY more weight than anyone expected. And, like everyone, she needed to keep gaining a little each year through mid teens, and no doubt will need a few additional pounds each year going forward.

Oh so s-l-o-w-l-y the BDD has eased. (Not sure it's right to call it BDD in cases like this, but you knw what I mean.) 

I think she's a pretty typical teen at this point - unfortunately, I don't know many - if any at all - teen girls who love their weight/size/shape, but she's OK with it now (no problem going out in shorts now, etc.) I know that would not be the case if she were still underweight - for her - she never lost enough weight to be considered underweight for her age/height, but still she was underweight FOR HER.

It sounds like your d is underweight, too. 

So please keep going to full wr. Hopefully, weight plus time will be enough to pull your d back to health with the BDD issues, as it was for my d. And if not, well, we tackle whatever challenges we are dealt. But weight is an essential part of the package, as PsychoMom says.

Best of luck. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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admum
Thank you both. Her team have her on a weight maintenance diet now. H and I both try and go above this but when she had put on weight she was accused of bingeing. They are a leading team. I have tried to discuss state not weight without any success. At one point they even said that she might in the future be allowed to lose weight under supervision which both H and I said no way. She looks healthy. She is a small size 6-8 and occasiionly size 4 (uk)in no way overweight. She isn't as musclulae as used to be as she no longer does any sport due to the BDD. When the team say no weight gain it's v hard to counter. Getting help for BDD is difficult. As it affects every part of her body and has stopped her going to school we are desperate for her to get help with this. At Bmi 22 it's difficult to argue with them. I'm going to see practice nurse to see if can get together old weight and height records to try and plot on the height and growth curves. My reading suggests about 5kg gain in years 15-20.

Thanks again both
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Psycho_Mom
Hi,


You say that her BMI was 22 at diagnosis and it is still 22? Ummmm.......

Well, I'm just an anonymous mom on the internet, not a "leading team" but I think maybe I have a teeny bit of common sense and I think you do too. Is BMI of 22 working for your d? Has there been any improvement at all in the last nine months? (I don't know, it doens't sound like it from what you've said, but sometimes improvement is slow.) If no improvement, what is the harm in finding out if she'd feel better at BMI 23? Absolutely no harm and a good deal of potential for improvement.

Sigh. I know going against your medical advisors can be difficult. Is it possible? Do you have other options? What would happen if you fed your d what you believe she needs, and told your team that that is what you are doing and if they have a problem with it they should talk to you, not your ill daughter. 

That they entertain the idea of your d losing weight in future makes me doubt whether "leading" is synonymous with "informed".

That's great that you are going to get your d's records together. Good for you!

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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admum
Thanks psycho mum. Have resolved to try and increase bmi slowly without raising with hospital. we are on waiting list for BDD team who will accept referral but have to get funding agreed which apparently might be refused by local commissioning body. Will have to face that battle My research also points to her needing a higher dose of SSRI for BDD. Will try and talk to paed at next appointment.

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believing
Hi admum
I just started scrolling after never thinking I'd be back here but daughter is restricting again. I do want to mention she also has BDD prior to anorexia diagnosis. Many years of that which interestingly like you we dealt with sensory issues with clothes early on. I'd love to help in any way with any BDD questions you may have. Definitely higher doses on ssri. I was just at a conference this summer and Katharine Phillips spoke and she said that is also what the newer research is pointing to.
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admum
Thank you for your reply Believing. I am sorry to hear that your D has started restricting. Do you mind me asking what treatment your D had for the BDD? Can I private message you? I have read the book "Broken Mirror". It gave me hope that she can get better. I just hope we get the funding. I am going to attend the next BDD conference here in the UK this November. Can you recommend any other books or websites? Thank you so much
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believing
HI it looks there's a way to email you, so I will do that and share our journey. [smile]
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