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mulberry

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Posts: 7
Reply with quote  #1 
Hello,

We have started attending FBT sessions with our 12 year old daughter, this week is only week 2 (the dreaded family meal) so will be 3rd visit including assessment week.

Our daughter is absolutely distraught before each one for about 24 hours, terrified, anxiety off the scale, and unable to eat.  She was anxious before the ED set in.

This week we were managing to get her to the table over Christmas with me and a DVD for some breakfasts and teatimes (this is a first for about 2/3 weeks) although snacks have become a disaster zone.  Lunch is relatively OK.

This emerging tiny, tiny improvement in her calmness around food was blown out of the water last night when she realised that is was counselling sessions today. 

So, by the time we get to the family meal, she won't have eaten for 24 hours and will be due for A and E visit.

We asked the therapist by phone about postponing it, but she said it wouldn't be any better next week.  My gut instinct would have been to leave it a few weeks as she is very slow to get used to new things because she worries so much, and is a very private person.  But I also feel I have to listen to the counsellors (this is the ED service in Epsom, Surrey, NHS referral via CAMHS.)

I'd welcome any views and advice - it is early days, and I am not confident enough to understand what support we are going to get from ED service especially if we report d's distress, and they say, yes,it can be very distressing for them.  It is still us that has to get her into the car, down a load of steps, and I'm not sure if this level of trauma one a week is helping.

Is there any support from CAMHS ED at home that anyone has had?

Thank you,

Caroline
tina72

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Reply with quote  #2 
Hi mulberry,
it is good that you found FBT and that you have theses sessions. And it is totally normal that she is anxious about that. It is not your d that is anxious but ED in her head that realizes that there is somebody to fight it now. Fighting ED causes anxiety for the patient. That is the price to pay. You can only try to help her to stand that.

You are at the beginning and you all must get used to it but I think your counsellor is right, it would not be better the next week. What I had to learn early is that you should not be afraid of something ED is afraid of. If you show weakness, you will lose that fight. You need to be confident and show her that you are strong and know what you do (fake it until you make it).

"Our daughter is absolutely distraught before each one for about 24 hours, terrified, anxiety off the scale, and unable to eat.  She was anxious before the ED set in."
ED patients are often anxious people, that is part of the character theses patients have before ED. If you are interested in that, read Carrie Arnolds great book "Decoding Anorexia". I was very surprised when I read that and thought "how can she know my d"?

It is not o.k. that she doesn´t eat for 24 hours. How did that happen? Not eating/drinking for 24 hours is a case for ER with ED. That is really dangerous. Tell us more about your problems with refeeding so we can help you better.

"My gut instinct would have been to leave it a few weeks as she is very slow to get used to new things because she worries so much, and is a very private person."
Normally I would say listen to your gut but in this case I now know it better. I did the same as you think about and waited and thought she needs more time but looking back I only lost precious time with that. Her health will get worser with every day you wait. Refeeding is a hard process and its better to start it yesterday. The tunnel is long and dark but you have to go through it to see the light. Without proper weight restoration you will not get her back. Food is her medicine and she needs to eat no matter what it costs. Her anxiety will go through the roof anyway so better make it worth it.

In my case (we live in Germany) there was no real help. We had to do it on our own and with the great help of the other parents here. Read and ask questions whenever you need. It is nearly 24/7 someone around.
Get some help from family or friends for the shopping, cooking, cleaning of the house if possible. And try to get some time to do something nice for yourself. You need power for a marathon and it will take a long time. But recovery is possible and you can help her to live a normal life again.

My d (17) was diagnosed with RAN in 01/17 and was IP for 3 months (no progress there). We took her home in 04/17 and started refeeding. In 07/2017 she was WR and in 10/2017 we saw the first changes in behaviour. She is still in recovery and we are fighting fear food and she still needs to eat a lot just to hold that weight. But she is back, and she is living a normal life again with school and friends to meet and she eats nearly normal now. Just to give you an idea what time it takes.

We can all help you. You are not alone. Here are a lot of experienced parents with recovered children who can give you good advices.
We are only in phase 2 but life has totally changed compared with last year. So don´t give up hope.
Tina72

tammy

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Posts: 47
Reply with quote  #3 
Hi Mulberry. We felt exactly the same way you do as initially our 8 yr old son was traumatised by appointments with CAMHS. We were not fortunate enough to get access to FBT initially and it was just a psychiatrist we saw. His anxiety was off the scale and we had kicking, screaming, trying to escape from a moving car etc. We felt that every time we made progress with the re feeding an appointment would set him off again and we struggled for days to get him to eat. It was a vicious circle.
We are now about four appointments into FBT and our son has only attended one. Our therapist recognised the stress it was causing and has just been working with my husband, my daughter and I to help support our son. She sees the progress with re feeding as the most important thing. That said we are probably in a different situation as our son is so young and because we had managed to do most of the re feeding ourselves at home before we got access to the FBT.
It has been a real struggle with off the scale violence and distress but with perseverance and compassion and using many of the tips from Eva Musbys book we are making steady progress.
Wishing you luck with re feeding.
Tammy
Foodsupport_AUS

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Reply with quote  #4 
Hi Mulberry, I apologise for the brevity of this response. I am having some major keyboard issues.
Your D is clearly very distressed with her eating disorder. Our role as parents and in FBT is to stand up to that disorder, right now she can't do that. She is terrified.
It is therefore essential that you don't let her fears and that of the eating disorder dictate terms here. Realistically at the moment FBT is for you to learn how to feed her. To get her eating more than her illness will let her eat. Show her ED that you mean business, and now matter how hard it tries be there to insist that food is going in, and treatment is going to happen. This is not the least about her privacy. She doesn't have to say a word at the session if she doesn't want to.

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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.
toothfairy

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Reply with quote  #5 
Hi Mulberry from across the pond.
This article is well worth reading.
https://www.mirror-mirror.org/getting-your-child-to-eat.htm

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Food is the medicine. Recovery is possible.
Torie

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Reply with quote  #6 
Hi Mulberry - I'm really sorry this is so hard.

Your d needs to see that you are stronger and more determined than ED.  Therefore, she needs to go to the appointment.  Backing down now would empower ED.

If YOU (not ED) decide in the future that the appointments aren't helpful enough, we can talk about going half as often or finding a different way for your d's vitals to be monitored.  Maybe in the future that could be a reward for finishing all meals. ("If you can finish this meal and all other meals this week, I don't think we need the appointment.  If you can't finish the meal, we clearly need more help."  Or something like that.)

If it helps to know your family isn't the only one, others here have had to frog-march ED-kid to car and then into clinic and / or actually carry them.  Sucks so much ... I'm really sorry. 

Keep swimming.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Kali

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Reply with quote  #7 
Hi Mulberry,

So sorry your daughters anxiety is off the charts and that you need to join us here. Maybe one way of thinking of it is that the eating disorders anxiety is off the charts because it is being threatened by being in treatment. There are many parents on this board who have walked in your shoes and you have gotten some excellent advice. The article that toothfairy posted is excellent.

This is truly a difficult and terrifying time. It sounds like you need a backup plan if your daughter doesn't eat for 24 hours. Can you discuss this with her team? 

The eating disorder will have many ways of trying to get out of eating and treatment, and being anxious about the appointments and trying to get you upset because she is so anxious so that you stop insisting that she be in treatment could be one way of achieving that. Instead you could try to develop a really good working relationship with the FBT therapist  and her team so that you can become well educated about how to refeed your daughter and set firm guidelines about your expectations for her being in treatment until she recovers. 

If your daughter had cancer you would not be negotiating or putting off whether she got chemo if her drs said that was the treatment. It is no different here. The treatment is FBT and food. I know it is our mothers instinct to protect our kids from distress but in this situation unfortunately the only way she will get better is to do the thing which causes her the distress, which is eating. So part of the work we need to do as parents for ourselves is to develop distress tolerance skills which help us cope and do the right thing for our children in order to help them get well, and make sure we are not doing the right thing to create conditions where the eating disorder can thrive. Separating your daughter from the disorder can help with that.

There is a high calorie thread on the board which you can visit which has low footprint high calorie meals
https://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425#gsc.tab=0

Please take some time to read around in the Learning Center for information about eating disorders.
http://www.feast-ed.org/?page=LearningCenter

Let us know how it goes today. Remember that the FBT team is on your side and wants to get your daughter to eat, and if you and they can present a united front against the eating disorder treatment will be more successful.

warmly,

Kali




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Food=Love
seaglass

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Posts: 63
Reply with quote  #8 
Hi,

It's so hard isn't it? The start of refeeding and recovery is so so hard.

I'm just going to add a different voice. My d is a year into recovery. I agree with everyone here that the way through is requiring your child to eat three meals and three snacks a day and to edge your way to weight restoration and then a less anxious state.

We persevered with FBT for months but we ALL found it torturous. I understood why my d might hate and dread the weekly sessions but I did too. I didn't ever find that they helped or supported by to help my daughter. I felt lost and judged and there was nothing in each session that helped.

It's just my experience but I truly believe that each family needs an individual approach. Work out what helps and what doesn't and if you feel the 'help'is not helping ask for a different approach.

I waited too long to be brave enough to insist that FBT was not the way for us. The moment I did things got better. I put my foot down and replaced it with weekly counselling for my d (private), weekly counselling for me (private) and weekly CAHMS appointments with a wise and gentle pschy who I felt was the best fit. So she had weekly weigh ins and a weekly review but we both had private sessions for support and in between I found the best ways to feed her 3 meals and 3 snacks. I got personal support from this forum.

I truly believe a lot of damage was done in our FBT sessions. Yes- it's the gold standard but it's not for everyone. And you can follow the ideal of finding your way to refeeding by 3 meals and snacks on your own.

I'm not saying don't stick with it but just saying that each family has to find and fight for the best support that works for them and that might not be the help you are automatically offered.

Food is medicine and you need to find the best support to administer it day by day. If you're not happy ask your team lots of questions.

Eva Musby's book is great. As are her videos. This forum is amazing.

It's hard. This illness is so bewildering and awful. You will be ok.

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