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

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tireddad

HI folks
i hope everyone is doing as well as they can in this horror show. I’ve not posted in a while. We seemed to be making progress. D is AN and has been in camhs treatment since last May (can’t believe it’s a year). Last few months she was doing better - eating well and independently and gaining weight steadily. She is now easily the heaviest I have ever seen her and her periods are regular. She is 13 and was never much underweight. 

then lockdown. At first this seemed to suit her - away from school which is a stress for her. But as it has gone on things have gone downhill. Her mood is very up and down but mostly down. There have been three or four episodes of self harm (cutting her arm) and in the last few days she’s back to restricting and resisting food. We haven’t seen this for months. 

Meanwhile CAMHS have been patchy at best. FBT support has not been regular or even great when we get it. We have essentially done it ourselves. And it seemed to be working. Then the focus started to shift a bit to her low mood and to CBT with a psych. But D doesn’t connect with the psych at all and the CBT doesn’t seem to have any progression to it - seems like the same wishy washy chat each time. And it’s still patchy and not as regular as it needs to be. 


 So we are now trying to work out where we are and where to go. This looks and feels like a huge step back. Back to her safe foods and watching food videos on YouTube. Lying in her room the whole time on face time or watching tv. More distant. Less willing to be around and do anything. And contained by the lockdown. 

She is saying she’s always down and I think struggling with the new weight. Think there may have been a few other triggers lately too. And the lockdown means she gets to spend even more time inside her thoughts with less opportunity for distraction. 

We can’t change the lockdown but we could change therapist. We are considering dropping cahms and going private to find a therapist that D can connect with. Does anyone have experience of this?  Or any other advice about what’s going on here? 

thanks! 

 

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melstevUK
Hi tirreddad,

Sorry about the setback.  I see you are in the UK and I would have doubts about bringing in a private therapist when it appears to be that clearly the shift seems to be needed back to eating properly and continued weight gain.

I don't think CBT is the way to go with a 13 year old but I suppose they are trying to help with the anxiety and low mood.  Is she on any meds?  An ssri such as fluoxetine might help in the longer term, although it takes time for it to start to make a difference.

I would be tempted to contact the team and ask if they can put the focus on eating properly again and encouraging your d to establish some kind of routine, which is good for any mental health condition.  How have appointments been happening during the lockdown?  Have they still been face to face? 

If you can explain to the team that the move towards trying to support your d with her anxiety has meant the focus off eating, and ask for their support in getting back on track with that - see what response they give you.  

So often it seems to be about steps forward and then steps back again.  I remember now that she has problems with school - was she back at school before the lockdown and how was that going? Are you furloughed and at home with her, and therefore able to help her establish a new routine?
Believe you can and you're halfway there.
Theodore Roosevelt.
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Ocras68
I’m so sorry that things are going backwards.  My daughter has also regressed.  Lockdown is awful for AN.  Just like you say, too much time with thoughts and not enough distraction, allowing ED to rise again.  So I’ve had to go back to basics.  Supervising snacks again (we had got to the stage where I could give my daughter her regular snacks and trust her to eat them).  Quietly ignoring the comments about food being “oily” or portions being too big. Don't let your daughter revert to safe foods.  If she could eat x or y just before lockdown she can eat it now.  Ban the food videos.  Go back to doing whatever you did before.

Try to get your daughter out of her bedroom or at least implement or re-instate an open-bedroom-door rule (we had to because of exercise compulsion).  Is the self-harming a completely new development?  I’m so sorry to hear about it, it’s very distressing.  You need to jump on it before it becomes engrained.  If you have a garden, take your daughter out even all cosily wrapped up sitting in a chair, in the fresh air and hearing the birds.  Playing board games helped my daughter.  Nothing stressful like Monopoly (and quite honestly who has the time?!), but shorter, more simple games like Cluedo or Labyrinth.  I know it’s difficult if you’re trying to work from home, but time spent now will stop her sliding further.

I’m not sure that changing therapists will be that easy or even possible at the moment.  I’m assuming you’re in England because of the reference to CAMHS.  I know it depends on where you live, but I found it almost impossible to track down a private therapist with experience of eating disorders.  Could you change counsellors within CAMHS?
 
As far as I can see, fighting an eating disorder is done by the family and CAMHS provide a bit of backup.  I liked our CAMHS therapist (my daughter definitely didn’t!) and appointments enabled a diagnosis, provided a structure for weighing and allowed discussions on progress, but it was my husband and I who did all the work.  I learned far more from Eva Musby and from this forum than I ever did from our appointments.  It sounds like you’ve been doing a great job and you can keep doing it.
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tireddad
Thanks melstevUK.

She was always at school. Her weight was never very low and we were quick onto the feeding so there was no need for her to drop out of school. We did go and do the lunchtime feeding for many months. The issue with school is twofold - she gets very wrapped up in all the usual teenage girl drama with friends and this causes frequent upset, and she has also been quite disengaged academically. Since lockdown she has been intermittment with online school but Easter break got in the way of that too. She is now a little more settled to doing her school work. Her mum is furloughed so is doing the heavy lifting with home school (I am still working).  We do not live together. 

She is not on meds. We asked about this but CAMHS said that the evidence based treatment for depression/ low mood in teenagers is CBT. That would be OK if I had the sense that they were even really doing any CBT, but I don't. I also have my doubts about its efficacy with a 13 year old anyway. 

The CAMHS treatment has been a combination of FBT and psych input. Both have been patchy. She had a psych that she really liked (even if I didn't think she was all that great) but she left so we have a new one and the relationship is not working. The FBT therapist has been inconsistent with meetings and again D does not have a great relationship with her either. FBT has dropped back a little lately with the focus shifting to the CBT as a result of D's eating showing significant and sustained improvement. Post lockdown, we have literally had a few phone calls and these have not been effective.  The treatment lacks any sense of progression. Even D says she is just having the same conversation each time and CAMHS seem only too quick to drop us if things seem to be going OK.  I know it is a service that is more or less in crisis, but I am fast losing what little faith I had in them in the first place.  However - the FBT therapist has been in touch and we are speaking with her tomorrow. If we are back to the refeeding then we know how to do that, hard though it is. Her low mood however seems to be taking her in different directions at times (e.g. self-harm, withdrawal) and that then seemed to be the priority. But is that all still ED?          
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melstevUK
Hi tireddad,

I am a big believer in terms of dealing with low mood and depressive states in younger teenagers by giving practical advice on now to deal with the world, helping them build up skills, e.g. in meeting people for the first time, not being affected by bullying by walking away, helping them to value whatever skills and qualities they have and helping them focus on the future, as well as learning to distract themselves by reading or whatever (not sport or intensive exercise) activity interests them.  Also learning to present a 'poker face' to the world in front of mean behaviour so that the perpetrators will eventually get bored.   That kind of thing.  I think you can validate your d's emotions '(this is hard right now, but it won't always be like this') but also teach her how to pull herself out of her moods by doing something nice.  

In terms of the self-harm, I would acknowledge it, clean or bandage the cuts but calmly say that this is not a way to deal with distress and that she has to learn to talk about and externalise that distress because she will have plenty of difficult situations in her life and that she has to learn not to be self-destructive but kind to herself.  

I don't know if this is general adolescence, the current pandemic situation or ed-related.  Feelings are feelings but your d needs to learn how to find positive ways of dealing with those feelings and parents can help with that as much as therapists.  It can feel frightening watching your child go 'off the rails' - but if they do this, it is because they are suffering.  Encourage her to open up with her mum or you.  Ocras68 gives good advice on taking charge of eating again and of activities which will offer distraction.  Jigsaws are always good for that too.  Also, what is happening with her schoolwork - is she doing as much as she is being asked to do?  It is worth checking up and enouraging and supporting her to do what is required.  

Try and get the FBT therapist tomorrow on board with encouraging you taking back control of d's eating again, and hopefully you can start moving in the right direction again.  Hope you have a successful appointment which gives you the support you need.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
tireddad wrote:
Last few months she was doing better - eating well and independently and gaining weight steadily. She is now easily the heaviest I have ever seen her and her periods are regular.

Wow, it is awesome that she is the heaviest you have seen with regular periods!  Kudos to you, your wife and especially your d!

It sounds like she may be getting close to weight restoration, which is often the hardest leg of the journey.  Keep the faith!  Keep feeding!

Not sure if she is ready for independent eating yet.  It is usually  safest to keep a tight rein on food choices, amounts, etc. for a l-o-o-o-o-o-n-g time.  Although it is draining and difficult, it is really worth it to keep up the vigilance so that she does not slip back into habits of "safe foods" and such.

Sounds like you have made really good progress!  Keep going. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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tireddad
Thanks Torie
She has been that way for months now and things have been pretty steady apart from her moods, but even that was improving. She has gained more weight in lockdown - lazing around too much and snacking a lot, which I was happy to just let go given the circumstances. She is also well into puberty so her body is changing too. Part of me wonders if she has bounced too far weight-wise (too far for her that is, not for us) and that has triggered this new restricting behaviour (it started Friday). She has eaten today but not enough and is clearly back in restricting territory. Will see how dinner goes. I am hoping that if we attack it head on we can crush this ED rebellion.   
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Torie
"Part of me wonders if she has bounced too far weight-wise (too far for her that is, not for us) and that has triggered this new restricting behaviour (it started Friday)."

Yes, but that would be rational thought.  ED is not rational.  This sounds like ED trying to get a foot back in the door.

"She has eaten today but not enough and is clearly back in restricting territory. Will see how dinner goes. I am hoping that if we attack it head on we can crush this ED rebellion."

Yes.  Crush it now.  Pull out all the stops if you need to. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Adlih64
Hi tireddad,

We have recently changed psychiatrist and this was enabled by the complaints procedure through patient affairs.  It was quickly acted upon and were surprised at the timescale.  We had been uncomfortable with the initial psychiatrist from the outset as had my daughter which unfortunately was justified as time went on with sheer incompetence and indifference which placed my daughter at great risk.  We did however have a good fbt practitioner.  The approach has been completely different and the whole system appears to now be joined up.   I think you really need to have confidence in the team treating your daughter and it has been such a relief that we can now do this.  We had no concerns around self harm until a few months ago but this did escalate very quickly.  I think it’s worth discussing availability of another therapist and going through patient affairs if you don’t get anywhere.
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melstevUK
Adlih64,

That s great news. Well done to you for complaining and I am glad there was a positive response. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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strawdog
Hi tireddad - - we're in the UK too so have been under the lockdown the same time as you. My D is WR and has just been discharged from CAMHS - just as lockdown hit but since then has regressed too. Sadly this is all to be expected - too much time for them to be sitting around with their ED thoughts on their shoulders. They've always been there but in the past they can find something to busy themselves with to distract them from the voices chipping away at them. My D has admitted that her ED thoughts are back a bit and that at least was a breakthrough but its so hard when they've been doing well to see this virus causing a backward step. The negative body image thoughts  are back - she will eat but is clearly not enjoying some meals (the ones that originally caused her anxiety) and is trying to cut down on snacks. The plus side of all this is that they are 100% under our watch so we can keep an eye on them and keep the food coming. My top tip is to try and keep them as busy as possible  - I know its hard but I've got mine painting the walls, digging in the garden and cleaning out rooms. Easier said than done if they're not receptive to such things - luckily mine is. I strongly believe the lockdown has caused temporary set backs to a lot of ED sufferers and as we come out of it things will slowly get better again. I think we need to not panic - just be consistent and take no prisoners -- what was good before lockdown is good now. Good luck.
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tireddad
Hi strawdog. Thank you and I agree 100%. Lockdown has been a huge challenge for her in lots of ways and it is showing us just how fragile her progress was, and how much her routine was part of her treatment. It is difficult to get her to do anything at all, not least as I am also trying to work at home to keep a business afloat.  When she does get more active she is better. However she is digging in on the food and has eaten the same menu two days in a row now and its not enough - it is back to safe foods. We have got CAMHS interested again, but there is talk of mood diaries and such like. This will not help, and we are pushing for the FBT team to get back into the picture in a bigger way. I'm trying tell myself that this is not back to the start - we know and understand more, we have more experience and she has been restricting for days not months as she was before we caught it the first time. She is also a healthy weight so I have no immediate concerns on that front. However she is also older and smarter and knows more about calories and all the rest. And I know that if she starts to lose weight then things can spiral very fast. We somehow need to get her to eat more but she is super determined as many are. I think you are right though - consistency even in the face of failures. That worked before - we just kept at it until it wore ED down and we started to make headway.  I feel we need to tackle the safe foods issue sooner rather than later but she will be very very resistant. 
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Kali

Hi Tireddad,

We are also on lockdown as are much of the world and we have been in the house since March 10 or so. Today is day 60!!!
Our lockdown is extended at this point until at least June 9.

Some things we have found helpful:
Try to keep on some sort of schedule even though it is difficult.


Try to encourage her with some tasks she needs to do everyday, whether it is schoolwork, gardening, crafts, putting puzzles together, family game night, watching movies, cooking or baking together and then eating what you make, online tutoring (khan academy is great for example) https://www.khanacademy.org/

And reinforce that by leading by example, for example keeping to a work schedule, and a cleaning, gardening, cooking, shopping schedule as well. Try to involve her as much as possible with whatever is being done at home. We all have cleaning jobs also to complete each week. If it is possible where you are, going out for a walk in the park or taking the dog for a walk can also lift spirits on a nice day. Simple pleasures have become more meaningful during this time.

Perhaps as a start you can go online with her and she can pick out some sort of art or craft project she might like to do or some kind of game you could have a family game night with, and then order the materials for that and do it together?

It is not back to the start with the food difficulties because you know what to do. It may be a sign of her depression though. Typically it becomes more difficult to eat when the person is upset or depressed, so trying to distract her as much as possible and get her mind off the food might be helpful. Then just serve the meals and eat together. If she is having trouble eating have you tried eating in front of a good movie on tv? I know that was never anything to aspire to pre ED, however it might get her mind off the eating so she can eat while focusing on something else.

warmly,
Kali

 

 

Food=Love
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