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

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hyacinth
This is my first post, although I have been relying on this amazing website for months. Our D was diagnosed with depression/ anxiety in October 2014 when 16. Psychiatrist/ CBT didn't help and symptoms worsened dramatically by May 2015 with SH and suicide attempts. Eventually we got a bed at a private hospital in June/ July and although she was kept safe, the RAN came to the surface whilst in the hospital and accelerated rapidly without good treatment. When she left the private hospital at a low weight to go back to CAMHS outpatient, further restricting and SH meant she was admitted to a specialist ED unit in September 2015. 

We are fortunate that she has received proper treatment there and when she stopped eating she was put on NG tube which lasted 3 months and is now considered WR (approx. BMI 20, which seems to be OK on her as we are all slight build in the family). She managed to get herself off the tube in December and has been gradually eating full meals on time since the end of January. The next steps at her unit are a series of eating tasks - family meals, offsite meals, restaurant meals and weekends at home before discharge. Realistically the earliest discharge date would be late May.

Despite some progress, she has been constantly living with really high anxiety and suicidal ideation. She has been doing SH with finger nails for months, although seems to be trying really hard to control it. Each new step is a major challenge for her. She is afraid of staying at the unit and at the same time afraid of being discharged. Her 18th birthday is in July and she will have had to have left the unit by then and transition to Adult Services (Springfield Hospital, S London), which will be a complete step down in the intensity of care. Is there anyone out there at all who has had success with Adult Services in the UK? (I know that plenty haven't). Up until now she has generally complied with the framework of treatment, even though she can't necessarily carry out what is needed.

She is very bright and is finishing her A Level exams whilst in the unit. For a long time though she has been afraid of the future which has made everything harder for her. She has very strong social anxiety and low self esteem. I have encouraged her to think about university and think that is probably the right path for her, but at the same time I read all the threads about how difficult university can be whilst still in recovery.

The thought of her discharge is quite scary given all of her co-morbids. She is on quetiapine and we are trying a 3rd anti-depressant, Mirtazapine. I just wanted to reach out to thank all of you who provide so much support through your posts, and to wish that this wasn't so hard.
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Sotired
Hi hyacinth and welcome.
Just off the top of my head,what we did when our d was gouging with nails was get false ones put on.i think they were silk tips.it lessened damage able to be done.so that's a practical idea that she can make look pretty.
Depression and anxiety is a hard one to manage.i hope her new meds work.it will take six weeks to see the effects though so it's about the long haul.
Discharge is always frightening for everyone involved.it sounds like she has a got a good team who are letting that happen slowly.does she stay a few nights a week at home?if not,that's a good place to start.gets you all used to the idea of her returning.gives you an idea of what challenges you will face when she returns and time to work out strategies to deal with them.
Good luck,
Sotired42
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hyacinth
Thank you, Sotired. It might be challenging to get her to have this done to her nails at the moment, although maybe it will be an option in the future if she is in a frame of mind when she wants to stop and wants help.

The unit doesn't do weekends at home until she is much further along, so we will have to wait for that. In fact she wasn't allowed to step outside the unit for the first 4 months because she was on the tube, and she has only been allowed weekend afternoon visits offsite in the past few weeks since she has been eating full meals on time. And even these visits are not supposed to be at home. As a result she hadn't seen our house for 6 months, but I got permission to take her briefly to our house on an offsite visit. She was pretty tense and walked into the hallway to see the pets but wouldn't go upstairs to her bedroom. In general she needs to take things very slowly - step by step.

For us the difficult thing is that although we have a good team now, it will disappear by her 18th birthday. Although that is 4 months away, that doesn't actually seem very far off given where we are right now.
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NellyMac_UK
Welcome Hyacinth,

your D sounds so brave and has made fantastic progress, I understand it is really frightening when they have to change to adult services, the care you have been receiving sounds excellent.  We are in a different part of the country to you and the service varies hugely depending on where you are so our experiences will be different.  Our D has not been admitted to hospital but cared for at home with the help of the crisis team, refed outpatient with an ED unit then discharged to CYPS/CAHMS.  We are just starting to engage with adult services, after some bad experiences with poor care in the past D is reluctant but our local team has recently changed and I have spoken to them and found them to be very helpful.  We do find that the services are chronically overstretched where we are due to cut backs so everything takes a long time.

Our D is also on Mirtazapine - it has pros and cons.  It has definitely helped with her depression/anxiety, but it makes her crave sweet/salty food and she often binge eats.  Before taking Mirtazapine she couldn't sleep and was agitated at night, but at a low dose it is very helpful and she goes straight off to sleep.  However, they recently doubled the dosage and this had the opposite effect and has kept her awake!  So it takes time to experiment and get the medication right.  We are currently waiting for a psychiatrict appointment to address her medication etc.

Our D couldn't go into her bedroom for quite a few months.  I slept with her in the living room for about six months, and then moved into her bedroom with her and eventually back to my own room.  Like you say, one step at a time.

Our D buys false nails on line and sticks them on with nail glue.

Thinking of you - today is Mothering Sunday and its so difficult, sending hugs xx

Diagnosed RAN October 2013, w/r but struggling with depression and anxiety.
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hyacinth
Thank you, NellyMac_UK. My D is on 7.5mg, which I think is a low dose. It may be helping, but it is difficult to tell because she is also anxious as the entire unit is moving to a new location at the end of the month, and she finds changes very difficult. It must be difficult dealing with the sweet/ salty cravings your D has - I haven't been aware of that with my D, but she is inpatient, so it is difficult to tell.

Sleeping downstairs initially makes a lot of sense. I guess we just need to be creative to find the right solution when the time comes.

I'd be interested to hear what kind of adult services you get in the end and what helps. We had hoped previously that our D would get DBT, but that didn't happen because she went IP. And I'm not sure how hard it is to get on adult services.

I really relate to your previous comments about it not being about ED any more. Even though our D is in ED IP, it feels as if it is a much broader set of issues for her.
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