Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Cantfindthewordsddstruggling - it's completely unsupportive parenting and partnering, I just don't get it. It would make me really cross. EDs are minimised by most people in my experience, but generally not by those who have been up close to it, so I'd be annoyed your dh thinks it's not his responsibility to think about his own behaviour.

We are doing ok I think. Even typing that makes me feel anxious, as I know how fast things can turn.

We are smack in the middle of FBT phase 2 and it's going alright. We are being supported by a good camhs worker, and they have helped us all to move things along - dd seems to be much more accepting of how ill she has been, and seems focused on actually recovering now. And they have helped me to loosen my grip on feeding by having various challenges which we have worked on, eg dd pouring out her own breakfast cereal.

After the last session my dd commented in the car on the way home that she remembered right at the start thinking that as soon as she could she would go back to anorexia, and she realises what a bad state she was in. It's a year now since the penny first dropped for us, and I've found it quite hard going emotionally the last few weeks, just remembering the awful place we were in over the last year. But at the same time I think I can start to see the progress that she and we have made.

Saying that I've taken a big step back from work as I was just getting totally burned out. Very lucky to be able to have some time to focus on dd and the rest of the family. But also on trying to recover myself, I feel like I've got ptsd.

I don't know, I'm not really sure where we are. But maybe we are managing to go in the right direction and if we keep at it then we can help her actually recover. I am acutely aware that relapse is very possible, so trying very hard to stay aware of things, not be too controlling, but not let anorexia back in. It's hard.

Hi just popping on, not caught up properly but curly could you speak to women's aid about leaving your husband? He is financially and emotionally abusing you and it is clearly effecting your dd as well. I think they can give you practical advice on your options in terms of leaving him.

If they are offering your dd inpatient or more intensive support you need to grab it with both hands imo.

I am sorry your husbands aren’t helping. And my heart goes out to you Curly. I also think it sounds as though your dd would do better were he not around. My dh really doesn’t get it properly either despite talking to the ED coach we are paying for. I am sure he’d be a darn sight worse without her trying to get him on board… it’s a slow process.

I am not having a great time here at all. Dd is eating and doing most of what I ask. She’s eating egg again, which is great. Idk if or when she will ever eat meat and that is a big worry as vegetarianism has a very big role in her developing anorexia.

The CAMHS psychiatrist really put a bomb in my relationship with dd and did some serious damage by telling dd she should be responsible for her eating. It’s been so hard to continue to get her to eat to plan. She’s nowhere near ready to go onto stage 3 having only started 3 meals, 3 snacks on 2nd August. I had been slowly gliding towards stage 2. And the psychiatrist totally undermined that process. Dd’s periods have now returned… after she was signed off from CAMHS.

Since the appointment, everything I say is analysed with suspicion. I am absolutely exhausted by it all and dd, currently presenting as possible autistic with potential PDA is too anxious to go into therapy. The psychiatrist made that one more difficult too as she gave dd the impression she is well despite her actually being very mentally unwell and still unable to see how ill she has been… or even that she is/ was ill at all.

How are people doing? I’m still battling to get dd out of bed in the morning for school. I’m still doing breakfast supervision and she’s always grumpy and at times even aggressive in the morning(not physically fortunately). So the whole process to get her up and fed in the morning can take an hour.
On a more positive note, we had takeaway the other night and I didn’t eat all my chips so dd helped herself to the rest of mine. It wasn’t that long since we were counting out each individual chip and going for the exact number the dietician said counted as a serve! We approached refeeding with serves of different foods rather than calories and also had a personalised list of what counted as a snack. Would love to burn the bloody meal plan at some point but I don’t think we’re at that point yet.
One thing the dietician has allegedly approved is Diet Coke which I’m not happy about. Apparently it was to increase her fluids. I was under the impression that any diet foods or drinks were a no no. What do others think?

Dd has a Pepsi Max addiction. She’s drinking less these days. It was about 4 cans a day. The ED coach told me that 80 or 90% of people (I forget which) anorexia are addicted to either the diet versions of Coke or Pepsi. It’s apparently because drinking these fills you up so you don’t need to consume as many calories.

I can only speak from personal experience. I am not overly concerned about the consumption beyond what it is doing to her teeth and gut bacteria, which are not things I can work on right now. This is because dd is consuming sugar elsewhere not just in the form of fruit (apples and grapes) but also various biscuits. So I’m seeing it as a blind spot for now.

As for how I am. Exhausted by it all. That’s my chronic fatigue. Sick of not being supported by dh. I spoke to the ED coach yesterday. She told me I saved dd’s life but that dd doesn’t understand and trailed off at what dh understands ‘as for (dh name), well…’. I relayed this to dh. She also said she didn’t think dd would have coped with being admitted to hospital with the ED due to her seizure medical condition, where her heart stops… everyone with this medical condition has a massive fear of hospitals btw - it’s medical but that’s the psychological element. This is why we have had to get her on board for dd. She can see he’s bullying me but was being careful not to take sides as this won’t fix anything. Later on he had a go at me for the way I stacked the dishwasher then when I asked him to stop and he doubled down, he got nasty and told me I have such poor self esteem, not like him. He doesn’t need to be validated by others like I do… referring of course to what I’d said earlier.

And I have since learned that the CAMHS psychiatrist told dd she doesn’t have an eating disorder. She said she has disordered eating. I’ve nearly finished writing my complaint to PALS. And a mum of one of dd’s friends, who has been so helpful to dd has admitted to undermining the FBT process with dd and intimated she thought I was being neurotic so this has now been explained. She’s been great but there have been some serious boundary overstepping. I’m hoping that now this has been explained she will be on board with the process.

I’ve been in tears several times today and I’m supposed to be sitting down with them both in a few minutes to eat. Dinner isn’t ready, the kitchen is a mess because I am just so down trodden and exhausted by dh and dd ganging up on me.

Forgot to say, it’s good your dd is eating the chips like that. I find putting food on the table encourages dd to just eat so we often have ‘picky bits’.

I posted on here just a few days ago on how my daughter is in recovery and doing really well.
Yesterday she had a huge row with her younger sister who said some awful things to her about how she's angry at her for having an eating disorder. It was terrible.
Today I looked in her bedside table and found a notebook with something I'm pretty sure was written after this row. It's basically a plan of how to start restricting again, a set of rules and ways she could conceal it from us. I feel sick. I don't know what to do.
Maybe she wrote it in the heat of the moment and won't try to carry it out. Do I confront her and tell her I found it and read it? I think she'll be furious at me for snooping. Or do I just remain incredibly vigilant?
I'm devastated. She was doing so well.

Hi @sammyspoon I just wanted to reply as my DD has a notebook and her notes app where she writes those kinds of relapse fantasies. The entries will often follow an argument with one of us or her siblings. She has so far not followed through with those fantasies, and "journaling" has been something her CAMHS ED therapist has recommended. So I hope that's the case for your DD too.

Hi @sammyspoon my dd has restarted restricting since the awful appointment with the CAMHS psychiatrist I detailed upthread. Dd has become devious when she wasn’t before. The psychiatrist basically gave dd permission not to eat. Up til then I could 100% trust dd. Likewise I’m devastated.

All we can do is go back to basics. If your dd is at vomit risk, she needs monitoring post meals and beforehand if she fills up on drinks etc. With my dd, if no one responsible sees her eat it didn’t happen. No sleepovers at other people’s houses, no eating out etc as she can’t be trusted. She will say she’s been to a restaurant. The credit card says otherwise…

That’s interesting. I checked again this morning and the notebook had gone. Maybe she suspected I had read it and has hidden it? My greatest hope is that she had her 2nd counselling session today. She only started last week. Perhaps the counsellor told her to write her thoughts down and she’s taken it in to show her. I wish I hadn’t seen it in a way. Her current behaviour seems normal but it’s made me feel sick with worry. Do you read what your daughter writes? @SicilianOrange

@sammyspoon I've no experience of this but I would remain vigilant just incase. Also depending on your children I would speak to them individually about the argument your younger dd being angry (I can see why!) talk it through with her incase she has unanswered questions. My younger dd and I go for walks and get our frustrations out together and we also remind each other of the positives and progress that we are making. Your ed dd you could ask how she is after the row, is she feeling angry or upset etc and see if she opens up. She may not but it plants the seed and she might in time or even discuss it with the psychiatrist.
This may not be the right approach for your family but just a suggestion and a virtual hand hold!

No I’ve not read anything @sammyspoon. I know her thoughts are dark as she’s pretty open so I’m scared to actually read stuff.

it’s definitely possible your DD has taken her notebook for her counselling. My DD is meant to but forgets quite often.

Sending strength and hugs

Thank you. The stuff she wrote really shook me up. I've not been able to sleep. I'm being really vigilant but so far can't see evidence of her carrying out the 'plan'.

How is everyone doing? We are still mulling over the pupil referral unit and having another meeting today to discuss. I think we will ask to proceed. No idea if we get in. It would be a 12 week placement and then re-integrating into mainstream. Still regular SH, hallucinations. Eating not great. I think it's better to give it a try in y9 rather than y10 or y11? Any thoughts? For those who had time out of mainstream education, how hard was it to catch up?

@GrannyRoberts have been thinking about you. How is DD getting on at secondary? Hope she had a smooth start.

Things aren't great with us really. DD is on the same plan she's been on for the last eight months and is refusing to increase until her therapist tells her to, so she's gaining weight at an incredibly slow pace, is sticking to some of the more problematic rules around the anorexia (can't eat if someone is annoyed, can't eat if elder brother is around, constant negotiation and swapping out of things, hovering in the kitchen when food is prepared.) It's utterly exhausting and infuriating.

She was given a chance at college after being kicked off her course last year. So far this term she has managed two lessons.

DH is back at work as much as he can but his annual leave is running out so I'm down to part time and looking like I'm going to have to quit work altogether as she can't be left alone. I have told her that if I quite my job we will end up having to downsize but it just doesn't register with her.

The knock-on effects are huge. My younger DS (14yo) hasn't been in school for a couple of terms now as the atmosphere is the house is so difficult and we often have no spare time to properly address that. (We are giving him the care he needs but the school avoidance needs a lot of time and DD just doesn't allow us out of her sight.)

I hate this so much.

@SicilianOrange It's relentless, isn't it? I am only part time but we have so many appointments at the moment and early collections from school that work is not happy with me either and I am already part time.

Have you applied for DLA (or Pip if over 16). I am sure she would qualify and this should help to ease the financial pressure a bit. You could then also claim carer's allowance if she gets it and you have to leave work. It's an insulting £81 per week only but you get class 1 national insurance credits and would lose out on the state pension...

Sicilian** can you ask the therapist to increase the plan? It is relentless, I can remember thinking I'll have to give up work which means losing our home etc. The anorexia just doesn't care about the bigger picture unfortunately.

Can you keep your dd out of the kitchen? Literally lock her out? Without getting the calories and fats into the food recovery will be unbelievably slow unfortunately.

Curly I think you need to take anything they offer you, your current situation has been unsustainable for a long time. Your dds education can wait, being well is the priority.

We're plodding on here, mostly okay, dd has a job at a dog hotel and seems to be managing okay. I've just moaned at her for not eating enough for lunch (some lentil crisps and a small amount of hummus 🙄) but overall she's doing okay.

She did well with her college results, 3 merits so possibly will be going to uni next year....

girlie we had a meeting this morning and are going ahead with the referral to the pupil referral unit. DD actually wants it herself. Hopefully it's not a process which will drag on for months.

Girlie, well done to you and your DD on her results. And on her job. Our kids have to go through so much compared with the average student and that they still manage to achieve is extraordinary.
Our DD is back at uni and we are keeping everything crossed that things will go her way with no major upsets so that she can continue with recovery. She will continue in outpatients and have regular dietitian and therapy appointments.
Sicilian, our DD is going extremely slowly with her meal plan too and whilst we would love to have a faster recovery we have been advised by everyone on her team that the slow steady approach works for her. Pushing her to up her meal plan results in her restricting again. She is older though and the illness was deeply entrenched so we didn’t really have an option. It is all she can cope with. And there is progress, just slow. But if it is sustainable then that is what is important.
Curly, good luck with the pru. I agree with trying a different approach if the current one isn’t working. I really hope it goes well.
Sending best wishes to everyone whose lives have been derailed by this awful illness.

Can I join you all? We have been on quite a journey over the last couple of months. Only took her to the GP in July after she admitted she has some issues with food.
We were referred to a Day Hospital, had to wait a month in which time she got much worse, she started there last week but sadly she couldn't eat there, it looked so good there. So now she's being admitted to an inpatient unit. Has anyone else's child been?
She goes tomorrow and we are both pretty anxious.
I feel for you all going through this, I never imagined how awful this illness is and how it can wreck everything.

Hi f11 @NanFlanders dd was admitted to an inpatient unit so might be able to advice.

Generally I think experiences have been positive and life saving for those kids that have needed it.

Yes, she certainly can't carry on as she is. She is going under a section 2.

Hi @f11. (and thanks for linking @Girliefriendlikespuppies ) The unit was very hard for my DD, but was the basis of her completely turning her life around. I would be very happy to talk to you about DD's experiences and what to expect. I'll DM you my phone number.

Shanghai101 - Yeah I have wondered if a slow and steady approach is what we need. It's been a year and a half though and the impact on the family is so so hard.

Girliefriendlikespuppies - I've emailed her main therapist today, she's got a review next week so we'll hopefully make some changes then.

Curlyhairedassasin - I think I definitely need to look into that. I know my work are being as patient as they can but at the same time as this they're coming down hard on lateness from other colleagues.