Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

I am so sorry that you find yourself here. In this situation, i think I simply tried to keep everything as calm as possible while waiting for an assessment/ admission. And kept in mind that ED symptoms tend to get worse when under a lot of stress. My experience was that a decision was made quite but sometimes there’s a wait for a bed if they think that’s suitable. most, if not all units will have some information on- line. The unit my daughter went to provided a booklet with the admission process and more details about what to expect which we both found helpful.

So sad to read of this suffering. Also now in this situation - Dd 16 was diagnosed with AN by the camhs doctor on Friday and on Saturday by the BUPA psychiatrist. Both doctors were concerned.

Dd herself was absolutely horrified by what the doctors were saying and we had a really good eating day yesterday. Not religious but praying that what the doctors said have hit home. We said to her she’s on a precipice of either a normal summer with her friends at festivals or sitting at home with us or in a hospital. After hearing that went into the kitchen and ate a large home made flapjack.

Mid GCSEs too so the timing is so laughably terrible.

Makes absolutely zero sense. She has an amazing life most teens would envy. Always had the perfect figure and was a great eater and enjoyed her food. She can’t say why it’s happening. Absolute mystery.

Hi @elderberrysmell so glad you decided to post on the thread. I hope your ds is doing ok.
@TheaBrandt1 it is good your dd is able to listen and understands. This will hopefully stand her in good stead. Lots of calm and love helps us through the dark moments. My dd was where yours was last year, just about to sit her GCSEs. When I tried explaining to her that she was eating less than a 1 year old, she said she didn’t need to eat to live. My dd also has a great life. These things don’t necessarily make sense.

My dd has just got back from a ski trip with school. She did 3 days out of a possible 4 full days skiing as she’d had enough by day 4. We booked it when she was very ill, even before starting to work with the ED coach as we wanted it as a goal to work towards. For a long time I thought we’d be cancelling last minute, especially as she refused to work towards getting ready for it and took a (PDA response) decision she wasn’t going. Plus the short relapse in Jan-Feb, it was down to the wire as to whether she’d be well enough to go.

I am so proud of her. Her teacher didn’t need to contact me as all ran very smoothly, no stomach issues, which I was concerned about. She took a lot of her own food, bought some more and clearly ate really well. She’s definitely not lost weight, which is quite a challenge when currently eating a limited range of foods.

As she acknowledges there is an issue and is a lot less bothered with others knowing, I’m hopeful that she will soon be willing to actively participate in her recovery and want to weight restore.

How is everyone doing?

That sounds great.

We are doing magic plate worked well initially then a gp said a stupid comment that Dd should be in control of her own eating (wtaf) so she pushed back and lost the weight she had gained doing that. She’s back on it now though and seems to be cooperating spurred on by terror of hearing a professional not just is telling her she will lose her social life. Just hope this is enough.

No post gcse trip for her. We are supervising her eating hard core now. The Musby book has been brilliant for us saw it recommended on here.

Hello,

Thank you @Mummyoflittledragon . My son is having a difficult day today. I think he is scared. He has downloaded the Teams app in advance of tomorrow's meeting.

At the bottom of me, I hope that tomorrow's meeting results in some sort of support. My son is incredibly socially isolated (no friends, no employment and so on). His father is in a care home, and his older brother is a very vulnerable young man (autism and schizophrenia) who is making some small steps in supported accommodation.

My son is awaiting an assessment for autism/ADHD, and he is very demand avoidant, which is one reason why support is so sparse.

Hi @elderberrysmell sorry that you find yourself here. Reading your posts, I really feel for you. You have so much on your plate.
People who are neurodivergent generally respond better to a slower, gentler approach. You should ask that the clinic follows the PEACE pathway, I.e. recognising and acknowledging his autism.
While you wait for treatment to start, I would recommend reading the book ‘skills based caring for a loved one with an eating disorder’ by Janet Treasure et al. Any psycho education that you do will help you to understand eating disorders better and to be able to cope better with challenging situations.
Check out the Charlie Waller trust for upcoming workshops. Also BEAT and FEAST-ed.
As your son is older, you may be less involved but if he wants you to advocate for him then you should be able to do that if he gives them permission.
With autism there can also be a PDA profile, a Pervasive Drive for Autonomy. In this case, it is really important that you don’t use a punitive/reward system. If there is something that he really enjoys and really wants to do but which the eating disorder is impacting, then you could say something like - I know that you really want to do X, I really want you to do X too, what can I do to help you achieve that goal?
The book will give lots of tips on communication but you are aiming to listen and validate your son, particularly as he may struggle with feelings. Things like -
I know how hard this is for you.
Thank you for telling me this.
This must be so scary etc

Treatment is the same for all eating disorders so it is likely that the first steps will be a meal plan so it might be worth discussing this with him in advance so that he knows what to expect. The unit may also have some resources in the form of a booklet with photographs explaining what will happen, which would also potentially alleviate some of the stress around the admission.

The most important thing, as somebody said earlier is to remain calm. Our unit says to be curious, not furious.

Wishing you all the best. It is a very long road but worth it in the end. There is lots of advice on here so please do ask again or share your frustrations if that helps.

@Shanghai101 Thank you for the really helpful post. I have the book that you mention, and it was used in some counselling sessions that I had with BEAT. I was finding caring for my son objectively very difficult because I had a very similar ED when I was younger.

My son does accept that he needs more support but change is so difficult for him. I really like the definition that you have given for PDA. I will update after the assessment.

The assessment has taken place. I was very relieved that my son actually attended the meeting (it was online) because he has a history of avoiding very stressful events.

My son was very honest. I was glad to hear that the team at the clinic take a holistic approach because my son has quite a cluster of issues. They were aware of his potential neurodiversity as well.

The two people involved in the assessment will feed back to the Multi Disciplinary Team and we should hear about any decision re a place on the unit by Thursday.

I really hope my son is offered a place and can accept admission. He really needs help to change and I cannot see him making change without considerable intervention.

I will update re the decision.

@elderberrysmell that sounds positive that he was honest with the assessors, a brave first step. Will be thinking of you both on Thursday and hoping you get effective treatment.
i know how hard it is but try to look after yourself too through this difficult time.

@Curlyhairedassasin how are you? And your DD? I hope things are continuing to improve. And for you too @Shedqueen

@Mummyoflittledragon you must be so proud of your DD for managing so well on the ski trip. That is great news.

We are stuck on a bit of a ledge but she has come a long way in the last 18 months so I need to remember that and manage my expectations.

Thank you @Shanghai101 . She is still in hospital and has lost weight since admission because she was binning her food and saying she’d eaten it all. Shouldn’t be able to do that but she wasn’t being supervised during meals. I despair…. More worryingly though, her thinking hasn’t changed at all. I think we are looking at another long stay for her. I am hoping that there is somewhere that can offer something new because what we’re doing now isn’t having any effect.

i hope things are going better for your daughter @Curlyhairedassasin

I hope that your son gets the support he needs @elderberrysmell . It’s good he was open. Don’t be put off by my experience, most people make more progress than my daughter and get better treatment even if it’s a slow road for everyone.

Thank you for asking @Shedqueen

DD has been discharged and is eating really really well and freely. it almost feels too good to be true. There are still a host of other MH issues. Self harm is ongoing, still feeling low and suicidal ideation but we take the eating for now.

Education is a massive worry. The PRU she was attending removed her from roll whilst she was inpatient and she cannot return (we need to get re-refered, go to panel again etc), her mainstream school where she is on roll is not having her back. Her EHCP is long overdue but the LA are stalling and refusing to finalise. She is now, in effect without access to any education. She doesn't know it yet - the PRU is on a 2 week Easter break so DD thinks she is having school hols. No idea how to break it to her.

Really sorry that your DD is still so poorly. It's shocking that she is getting away with binning her food. Is this an ED unit?

@Curlyhairedassasin is she taking antidepressants? I have seen some improvement with the more effective classes of antidepressants. The education system is dreadful- it would be good to think that being out of school would make the LEA act more urgently.

My daughter is in a general hospital rather than psychiatric unit or SEDU. She should have been on one-to-one nursing. However people aren’t always available or go for breaks and she will purge/bin her food. This has happened in an inpatient setting too. She presents very well and I think staff can think she’s better than she is.They were ‘shocked’ whereas I think she’s behaving like someone who is really sick and has restricting/purging anorexia. I don’t judge her but I am used to having to be sceptical about what she says sadly.

@Shedqueen yes, she is on ADs. Has been for years and changed a few times. We did change it in hospital again for a 3rd time. she is also on olanzapine which got increased in hospital too. Olanzapine is an antipsychotic drug but helps with the extrem anxiety around eating. DD was put on in during her first admission a couple of years ago and I believe it was instrumental in getting her to eat.

DD was also on a general paeds ward. DH and I took turns so oversee all meals. There is no way the ward staff would have managed. Is this a possibility for you too?

@Curlyhairedassasin Delighted to hear your news! Sorry to hear about the education situation - have you tried your local councillor? Our council initially refused to fund education at my DD's EDU, arguing she could access education from her mainstream school if they emailed her tasks (she was way too ill) and our councillor was helpful. We wrote a very stern email copying in EVERYONE - hospital consultant, councillor, head of education at council etc.) and it was reinstated. We cited the Disability Discrimination Act iirc.

Thanks @NanFlanders We will probably go down the legal channels to try to force them to finalise the EHCP as this is the thing we need to get sorted so she can start GCSEs in Sept. It's a statutory process after all and the LA agreed to issue but are now playing all sorts of delaying games. The lack of current education (because of the withdrawal of her PRU placement) is a separate legal issue. Need to speak to her mainstream school after Easter so they can refer again. It seems neverending but so happy with the current situation re her eating.

@Curlyhairedassasin that is great progress. Well done.
as a child out of school she should be on the top of everyone’s list for a school place. Maybe this could be an opportunity to request one of those small independent schools, where she would likely thrive. I would be getting her psychiatrist and your MP to push for action now. Best to have everything in writing so follow up any phone calls with email. I think you know this already though. Apologies, if so. But it can’t be right for a girl who desperately wants to learn to not have a place in a school that can nurture her and meet her ND needs. They would accommodate her if she was in a wheelchair and this should be no different.

Sending best wishes to all of us struggling.

Can I ask for advice with my 12 year old? Have been to GP multiple times, CAHMS also (they were awful). I cannot get anyone to take me seriously because my daughter has grown over 10cm taller in past year so weight not changed a lot. But she has fallen from 38th centile to 8th centile weight for height. I think 84.5% of expected wfh. Left to her own devices I think she eats about 1200-1400 calories a day but I am encouraging that up to over 1700 as much as I can. Still not enough and aiming at more. She loves sport and I have pushed a snack in afternoon in order to train. Most days she has tolerated that, albeit not keenly. Today she hid from me; I managed to persuade her to eat eventually and then she started crying. It was just a tea cake. She has stopped talking to me pretty much. I dont really know if I am doing the right things or what to do next. I feel I am damaging our communication just for a small increase in calories though I am sure this is needed. I also feel there is no support. I have read about RED-S and this sounds just like her...wondered if there were pruvate clinics in London anyone had tried.

Thanks again; I am so stressed and afraid.

@LondonBridgeisfalling you are absolutely doing the right thing insisting on extra snack on sports days. This is standard with ED. Your dd is most probably crying because the ED voice is upsetting her. Lots and lots of love, cuddles and affection to pull her out of this. Idk if you have any of the books or been to carers workshops. They have been so useful to me.

Your dd is likely doing so well because she’s fit and will be slowly using her muscles - including her heart - for energy. In reality 1700 calories isn’t enough to be training and not losing weight. As for clinics, no, I don’t have experience. I would get in touch with Jenny Langley, who can give you a lost of dieticians. A lot of places won’t touch under 16s. The Priory will so you could contact them if you have the finances. We are travelling a long way to see someone up north, who is very good with dd.

You mention carbs. Is she having enough protein? Protein has been key for my dd. She’s gone veggie and I got her to eat a big slice of cheese in the morning extra for snack and a slice in the afternoon on sporting days. She’s not ready to engage in the process fully to weight gain but things crept up slowly. If you do a see all with my posts, you’ll see the lengths we went to to achieve this…

@Shedqueen sending love to your dd and hoping that she will be transferred to specialist services soon.
@Curlyhairedassasin that is such good news. I do hope she gets a place at a school, which can accommodate her needs. There is a specialist provision school around here, which allows students to stay on til 17 for GCSEs. Just a thought in case there is something like that near you, where she could integrate later and stay older the accepted norm.
@Shanghai101 spoke too soon about my dd. She has lost weight. It was just hidden under the clothes. And the nastiness / beast is back in charge. Dh is on board a bit to get it under control for a quick turnaround and I’ve been hounding him. She was forbidden from sleeping over at a friend’s house yesterday, who is a great kid but I suspect gives her too much escapism. Two friends, who have her back, especially one stayed, here last night instead - she’d seen them in the afternoon. One makes her really accountable so dd has been keeping her at a distance for months. The 3 of us forced the issue of why dd has been keeping her at arms length. Dd was shut down then suddenly got incredibly upset, which is what happens when the ED is fully in charge. She then finally opened up to them about how bad it is right now. Dd is fuming with dh and me as I wanted to know what she ate for evening snack as she refused (won’t eat whilst being watched) and stormed out the house at 10.45 pm. Luckily she had the sense to just hide around the side of the house. The evening before I’d got dh to doggedly wake her up to eat evening snack. This is brutal but needed. The deficit was less than a week so she will be better in a couple of days. Dh is taking her away to see fil to she needs to be… I’m staying home to rest. But she’s gained a lot of new skills and confidence and very importantly showing a lot of empathy to her friend, who was ill. The ED coach, who saw her Monday maintains we can turn this around fast and that going was the right call.

London I am far from an expert but have read the Eva Musby book. If she’s not eating she needs to minimise calories spent.

Dd is 16 and has been limiting her food for about 8 months. Always a delightful girl she has been snappy and odd recently. We’ve just seen CAHMs and a consultant who both diagnosed AN and endorse the Musby plan. She is not allowed to do any exercise now. We drive her everywhere.

Think we have turned a corner as after seeing the psychiatrist who was quite hard with her she has twigged she cannot go out with her friends or have her lovely life if she doesn’t eat. Her summer will be shit if she carries on. I even said “play stupid games win stupid prizes Dd”.

After realising that she voluntarily ate a massive flapjack and has followed our magic plate plan without question ever since. We are on day 4 of her eating 5 times a day. The horror of a summer spent at home with Dh and I and not with her friends and boyfriend has proved a motivator for her. Feel she’s on a precipice and could go either way. Both doctors were concerned she’s on 2nd percentile.

This is just an update on the situation with my son. The ED unit are now looking for a bed for my son. He had some physical checks at the community MH clinic and a doctor called back strongly advising my son to go to A and E due to arrhythmia and bradicardia. He opted not to go, so I am staying with him as an almost one to one support until his next check on Tuesday. A combination of Easter and working from home makes this possible for me.

Relationships are really important to my son. Although he is totally socially isolated, he seems to either relate really well to people, or form fixed negative opinions. There are two members of the community mental health team who my son seems to relate to very well. He also seems scared by the results of the ECG, so he has exercised a little less (just walking and no weight training) and eaten a little more. Most importantly, he has not engaged in any purging behaviours for a couple of days.

I still think inpatient treatment would give him a better chance of having a longer break from his behaviours, and some of the multitude of other issues may also be recognised.

That must be very hard for you @elderberrysmell. I remember the time when my daughter’s observations were all off too and the constant worry until we started intensive day unit treatment. Once that started she had daily observations so I could relax a little knowing someone else was holding that responsibility. Don’t be afraid to take him to A&E though, or call an ambulance, if he deteriorates as young people can keep going despite being incredibly unwell and can then go rapidly downhill.
@Mummyoflittledragon it sounds like you have relapse contingency sorted 😊
Thats good news that she has the skills to halt a decline.
@TheaBrandt1 i hope things are still going well. Sounds like you got off to a great start.
@LondonBridgeisfalling you are doing the right thing with the extra snack. If possible, try to get on one of Jenny Langley’s workshops as she has a wealth of information. She advises not using a punishment reward system but rather saying something like we know how important sport is to you and we really want you to be able to continue to do it. How can we make sure that you can keep doing your sport?

Communication seems to be incredibly important with eating disorders so if you can try to get on a carer skills workshop. They are run by the Charlie Waller trust and BEAT, I think feast-ed also.

Everyone says that eating disorders are about feelings not food so if you can find a way in and get your daughter to open up to you, you may be able to nip this in the bud. One of my biggest regrets is not getting my daughter a therapist when she was a young teen before the eating disorder took hold.

I hope everyone is doing ok. My daughter is coming home today. So nice to have her home.

She’s still a very low weight but more stable and not totally dependent on food supplements. No longer sectioned. Hoping things will work out better than on her previous discharges: one time it will go better for her!