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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Mog
We discovered last spring that our, then 15 year old, daughter was making herself sick after meals. This started following a vomiting bug and I spotted it within days. She was being sick really frequently and I managed to get her an urgent referral to CAMHS. Although she admitted to it and went to the GP willingly, she was no where near ready to engage with CAMHS or discuss her feelings openly with me. After a few months she seemed to stop - no evidence of purging, controlling behaviours lessened and food obsession decreased. She was discharged from CAMHS.

At the start of lockdown, when she seemed bright and happy, we had a really good chat about how the underlying issues of the purging had never been addressed. She thought it would be useful to talk to a therapist so we put her in touch with counsellor who specialised in eating disorders. She obviously admitted that she still purged to the counsellor who suggested she went to the GP for medical checks. Over the three weeks from the start of counselling to the GP visit she started to noticeably eat less and lose weight. The first blood test result indicated potassium levels were low and then weight loss and low mood escalated. She had to take a potassium supplement, and levels have been fine since but she now has neutropenia (last level 0.97) which is terrifying during a pandemic and has lost approximately 2 stone (now weighs 50 Kg at 5ft 7).

She was urgently referred back to CAMHS by the GP who was supportive and seeing her every 3 days when potassium levels were low. After a five week wait, she finally had a video call with a clinical psychologist yesterday. Her next video call is scheduled for 4 week’s time! She swears she did engage and didn’t say she didn’t want to talk. As she is now 16, I feel completely out of the loop and powerless. I am trying to be calm and encouraging with meals, to get her to eat more but feel I am the only one who has directly told her she must eat more. We have always been close and get on really well when not discussing eating. She is still very sociable. There is definitely part of her that wants to recover but she is clearly very conflicted as she likes her new, very skinny, body.

I called CAMHS to ask to speak to her psychologist today but she hasn’t phoned back yet. I assumed she would at least get an appointment with a dietician and the importance of meal planning/ 3 meals and snacks would be discussed. I have read all the key books (last year and again now) and assumed I would get some support with trying to implement this. I feel I could tackle this but need some back up from the professionals.

Any advice on getting more support would be greatly appreciated. 
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Foodsupport_AUS
Sorry that you have had to come back here again. I believe you are in the UK. I can't offer you much guidance on how to get more support, however I would agree with you that one of the essentials of managing all eating disorders is normalising nutrition. It sounds very much like your D is restricting her intake and is rapidly becoming at risk of medical instability. The thing is trying to persuade her of this is a lost cause. Getting a general agreement from all involved will at least help you feel supported whilst you insist that your D does eat all meals and snacks along with supervising after meals to reduce the chances of purging. 
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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Enn
I am quite worried about your d's physical health at this time. I gather she is still purging as this can cause low potassium and or she is quite dehydrated (contraction alkalosis). Can she be assessed in the hospital to ensure she is medically stable? although fine with supplements is that they treat the product and not the illness itself.  The thing about the low potassium is that it may fluctuate a lot and can cause cardiac arrhythmia and you can't just follow the potassium properly at all. She will require an ECG/EKG at least, but that is just a snap shot over 12 seconds. 
I understand that you wish to have the professional back up. Is the GP willing to give you authority of caring for your d? I would ask them to tell d in no uncertain terms that you are now in charge. 
Here is a page you may find useful.  https://www.feast-ed.org/worldwide-list-of-ed-advocacy-organizations/
Here is another link to the Scottish Eating disorders interest group SEDIG.  https://www.sedig.org
And @melstevUK is a good resource as well.

Are you able to take full control of all meals and supervision 24/7?
That is where I would start. The thing about the professional support, is that they only have appointments with you one hour a week at most. You are there all the time and are her best doctor, nurse, therapist and dietitian because you do know it all. You know what is happening and so how do we help you and support your efforts while she is with you? 
We all know how awful ED is and how COVID has really thrown a wrench into it. I am sorry. 
I hope there is something there that helps, but if not just toss it. 
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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Enn
I did forget to mention Eva Musby as well. 
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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Mog

Thanks for your advice. GP did send us to hospital for an ECG which was normal. Blood tests were being taken every 3 days until potassium levels normalised but now back to every three weeks, despite low neutrophils. I managed to speak to her psychologist at CAMHS who couldn't breach confidentiality but agreed to arrange a medical checkup with a CAMHS nurse and said she's trying to build trust so hadn't wanted to go in heavy on first chat. She's off on two weeks annual leave hence long gaps between appointments. I did feel reassured that she listened to the gravity of my concerns about my daughter's health though.


My daughter is very social still - the ED hasn't affected her desire to see friends and keeping busy is a real coping strategy for her at avoiding low moods. I'm really scared at the prospect of stopping her meeting up with friends to supervise every meal as she will be incensed. She claims the GP and the psychologist have both said I shouldn't put too much pressure on her to eat as I am making things worse. As she won't let me be involved with appointments it is very difficult for us all to be on the same page - it would really help me if they could reinforce the message that I have to be in charge of meals. I will ask for their support with this.

i've watched some of the Eva Musby videos and have ordered the book which looks really useful. It's just such a daunting prospect - I'm struggling to find the strength and hide my anxiety. 


Thanks for your advice. 

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Enn

Although I understand your hesitation to stopping her social life, I would as you to consider that by stopping her social life for awhile and supervising all meals may actually benefit her and you greatly. Yes it may be awful at first but it may help you get control of ED. You could also use the socialization as a motivator. For example’ you eat then you go out with friends’. She may be using her outings with friends to cover up that she is not eating either- very typical of ED.

When she says that your are making it worse, remember that may not be what her team told her. There is nothing stopping you from telling the team what she has said and what you are concerned about. Professional mental health teams are very aware of ‘splitting’. They will pit you and them, the team against each other. It allows ED control, albeit false. 

Low neutrophils can be part of the bone marrow suppression due to malnutrition. 

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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Enn
I meant you could actually reach out personally to Eva Musby.😊
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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Ronson
Hi - I am in Scotland and happy to share any experiences if that helps. 
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