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

[greydoor]

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

she is seeing and hearing things. the whole experience is just extremely stressful for her and made her at some point suicidal. but it seems to be a bit better at the moment. she knows they are not real. hence nobody is worried about a psychotic episode but it's attributed to her anxiety and depression (probably correct). Started only a few months ago.

Curly I'm so sorry, what a twat. I know I don't know your dh but the fact he's checked himself and blocked you for 6 weeks. I honestly have no words, I'd change the locks for him coming back he can permanently check out, this is hard enough without support. Both kids leaning on you, who do you lean on? I'm fucking angry on your behalf! Glad the hallucinations seem to have settled long may that last, maybe your dd picks up on your husband's negative energy and that adds to her anxiety?
@H0WDOESANYONEDOTHIS there are a few different ways (no right or wrong way) which ever suits your family better. It's the ed controlling your dd and having her prepare food. You prepare the food and sit with her while she eats she doesn't leave the table/sofa or wherever she would normally sit until it's eaten and the next snack or meal is lined up if she refuses. The hope is she gives in eventually and eats and each time does get easier. If she still refuses come the end of the day you go to a&e for obs due to lack of nutrition- they either say all is fine and discharge you or admit you. The other hope here is after going to be checked they'd rather eat and keep out of hospital but the medical professionals are aware of what is happening at home. Other option is still you prepare the food (do you have a meal plan yet from the ed dietician?) and give a time limit 45mins-1hr for meals and 45mins for a snack unless progress is being made keep going. If the meal is refused you offered high calorie drink fortisip etc if that is refused again a&e. You really are fighting a powerful demon the screaming that follows is it trying to keep control of your dd you need to fight to bring her back.

@Proseccoismyfriend yes, DD keeps saying that she finds it hard being around him as he is always angry and grumpy and she is walking on eggshells. Yet still she wants him to love her :(

@Proseccoismyfriend

I have read about it and we have a meal plan.
But there's no way she would come out of her room and sit at the table to eat breakfast we've prepared. She just won't. Then lunch, hasn't had lunch for months, she would just come in and make her porridge, how do you stop them? Dinner she won't let us prepare at all.
I know it may sound strange but there is no way she will do this, like how do you make them sit there? I don't get it she would just storm off to her room

@Curlyhairedassasin that makes me so sad, have you told him? Obviously you can't right now but maybe him hearing would give him the kick he needs to support you all.

@H0W you use any leverage you can usually removing their mobile, restricting seeing friends, sports or anything they enjoy all stops until they eat properly. If she normally eats in her room you can continue with that but ed's are very sneaky so she does need supervision and support as it's really difficult to establish normal eating again. You stand your ground and fight for your child ( a lot easier to say than do, this has been the hardest journey I've ever been on and I quite easily could have given up). If your dd doesn't follow the plan or increase calories depending on her wfh and how unwell she is they are sometimes admitted to start refeeding. There are others who I'm sure will be along with much more experience than me, it is so incredibly hard. My son who is normally so placid threw food, plates, tried to leave the house, he hated everyone and everything he'd do anything to avoid eating the food. We had a week admitted to hospital and the threat of going back was enough to get us heading out of the dark that you are in right now, even almost a year on it still isn't easy for him and some foods cause more distress than others.

Curly I would assume he's left you, I agree change the locks and start thinking about getting legal advice. He's a complete bastard and you and your dds are better off without him.

How take your dds phone, tell her she gets that back when she has completed her meal plan. You have to be persistent to the point of being completely bloody minded. In your head you're thinking 'you will bloody eat this even if it kills me'

You make her lunch and take it to her, you sit with her and insist it gets eaten. If she walks away you follow her.

Ultimately you might have to stick her in the car and take her to a&e.

Not eating is not an option.

It's really hard but you have to be strong and appear strong even if you don't feel it.

How it might help to know the extreme responses to being made to eat are common, on this thread there's been kids who put the foot through oven doors, one kicked a car window out, one tried jumping out of an upstairs window, my own dd ran out of the house with hardly any clothes on in the middle of winter. Some parents have had to call the police as their kids have become violent or run away.

This is sadly a normal response to being made to eat. They've trained themselves to be petrified of food so you will see an extreme fight or flight reaction when you take control.

Once you start seeing the beast you can start to slay it, seeing these reactions is the beast (ED) so don't be afraid to poke it!

I’m sorry to hear your stories. So many struggles. I hope your ds turns a corner soon @WoodenTrain. It sounds as if he was doing so well.
@Curlyhairedassasin Presuming he's not out of range or his battery died, there is no excuse for not being contactable. In a case, he sounds awful. If your dd hasn’t self harmed since he left, I would have thought this is something to pursue and pick apart. I would be wondering if he’s a big part of the problem.

HOW / HOWDOESANYONEDOTHIS
Are you and the same person?
For my dd it’s all about finding her currency. My dd has just started on the 3 meals 3 snacks plan. It’s been a massive struggle. She started off with one meal 8pm onwards and always the same foods, circa 400-500 calories. Only eating in her bedroom or at the cinema. Then when she went to school for A level taster the agreement for allowing her to go was that she ate a sandwich at lunch (had to be a sandwich to get the carb and protein so cheese or egg as she’s gone veggie as part of the ED).

The Saturday after, I said no going back and that she eats lunch as well as dinner or she’s back on bed rest. She then really really wanted to go to a friend’s house for a sleepover but refused lunch. So I told her she couldn’t go and to go to bed. It took 2 hours until she changed her mind and conceded. Thereafter she ate lunch. Her calories upped then to maybe 1000 and continued to slowly climb as I prepared miniscule amounts more. Plus we added in an evening snack doing the same method several days later.

A lot of this is experience and reading the signs. We are using an ED coach to help with this but it’s relentless work. Counting calories, noting moods, behaviours. I suddenly realised last week that dd was restricting more. It creeps up on you and needs nipping in the bud asap. I’m rather scared of dd atm btw so having to keep that in check. She is so vile to me so it is really hard to be constantly fighting.

The plan on Friday (2 days ago) was to crack breakfast. We have just arrived on holiday and brought a very supportive friend for her. She relaxes and eats a lot more with friends. Dd will be active on this holiday and needs energy. So friday she was given an ultimatum, eat 3 meals and 3 snacks or we don’t go on holiday. This was 100 percent meant. I put the plan to hee whilst picking her up from a friend’s house at 8am and I had breakfast and the schedule on a printout. As she refused (and hit me), instead of going home, I drove towards the friend’s house to break the news. Dd finally relented just before we got there. She was absolutely fuming with me having recently finally been a bit nicer after months and months of being just vile.

As for what she is eating, dd relaxes around her friends so putting various foods on the table encourages her to put food on her plate that she hasn’t been having for a long time. I then just chanced my arm and put some biscuits and chocolate on the table. Dd ate 3 biscuits and 2 maltesers. I’m trying to get the balance right between telling her she’s got to eat and leaving her to relax so that she naturally eats more. She knows every day for the next week she has to eat loads otherwise she misses out on her activity for the day. She’s doing a horse riding week. The riding isn’t terribly intense, which is why it’s ok and the battle to get her ready has been huge. And I’m determined there is no going back.

I get this is a long way away from where you are right now. What the ED coach said to me is that if dd eats the same thing day in day out it’s fine. What she’s eating (or rather the only thing she was eating at 400-500 calories) is balanced so I’m lucky on that score. Carrot sticks and humous so I bought the highest calorie dense I could find and very slowly upped the quantity of carrots, weighing and counting the exact calories every day. I understand that’s hard to do when your dd wants to make food herself.

What I say when I want to change a behaviour is ‘this is the last day that you can do x’. So this is the last day you can skip breakfast. Or this is the last day you can eat lunch and dinner in your bedroom because eating alone is the thing, which makes her restrict more. Dd complies because it’s giving her a warning / deadline and not expecting an instant change and it allows her to kick off then adapt.

Mummy you sound like you're doing brilliantly, it is amazing when you suddenly see them think 'shit she really means it' 🙈😂

When and then worked well for my dd so I used to say 'when you've eaten that then we can go for a walk/see a friend/pop to the shop etc.

My dd seems to be reflecting a fair bit at the moment, we bumped into my 15yo nephew Ystd who was on good form and surrounded by a group of friends. Dd said what was I doing at 15? And I had to remind her that it was when she was very ill and in the depths of lockdown as well 😥

Her memories of that time seem really hazy.

I also likened the ED to an abusive partner, in the early days it tells them how amazing they are, how they are better than anyone else and bit by bit the ED isolates them from all the people trying to help them and more and more abusive to the sufferer.

Thanks @Girliefriendlikespuppies I agree it is amazing when you actually mean things as a parent go from being controlled by the ED to going against it. I have to keep checking myself as it’s so easy to fall back into the trap of bending to the ED’s will. Absolutely relentless. She’s off on the riding thing this week and having lunch and snacks there and they are strictly not allowed to take food. She’s been told under no uncertain terms if she doesn’t eat she doesn’t get to go and will just drop her friend off. Also applying a bit of pressure to try the meat (here’s hoping). It’s France so they don’t really do veggie. It’s her 3rd year of doing it so she knows all about the food. Her friend is there to keep a little eye on things and I will remind her to contact me if things are going awry.

Ah bless your dd. Lockdown really cannot have helped her at all. My dd says she doesn’t remember the feeling of having no energy, maybe it’s part of the denial or perhaps it’s because it didn’t last long. She gets really mad when I talk to her about her ED. And yes, just like an abusive partner.

Mummys strategy of giving advance notice of changes to meal plan has worked for us too. The ED thoughts are especially loud after eating so we’ve found it helpful to arrange activities for immediately afterwards. In the early days this was doing anything crafty, watching TV etc but now it is more active and might be a bike ride but nothing too strenuous for obvious reasons.
Allowing our DD to eat alone never worked for us. We had to assume that if we didn’t see her eat it then it wasn’t consumed. Also, we needed the help of a day unit to reestablish eating. We could not do it at home. Not everyone can.
Curly as hard as it is with your husband blocking you and leaving you to cope alone with two high needs children I would try to look at the positives - DD not self harming since he left and a reduction in her hallucinations. By the sounds of it he was never hands on with helping DD recover so maybe this is for the best - easy for me to say I know. I am so sorry, it is an awful lot for you to carry alone. It is natural that she will want him to love her because he is her father. If she will go to therapy then I would encourage that as there is so much guilt and shame tied in with an ED. My DD didn’t engage with therapy for a long time but it has been a big part of her continued recovery and she is becoming much more self aware as a result.

Hello all - I am reposting this from the Teenage section as a helpful poster suggested it:

Hi all - I will try and be as concise as possible. We've had a few very difficult years with DD16 and I just don't know what to do anymore...

2020-21: Became very anxious during lockdown and subsequent return to school, stopped eating, panic attacks

2022: Urgent referral to CAMHS for suspected anorexia, 1 week off being hospitalised for low weight but she co-operated (and basically lied on all their psychological tests and said she didn't think she was fat etc and she wanted to put weight). CAMHS discharged her after 6 months with a referral to see a NHS Dietician (DD saw them once and refused to go again). CAMHS never gave her an official eating disorder diagnosis and said instead (based on her interviews) that she had lost weight unintentionally through stress and anxiety. Only very recently, this month and nearly two years on from her referral, has she admitted to me that she was anorexic.

2023: Since weight restoration (she is still only a size 6 but is very short), she has suffered from severe stomach pains, constipation (resulting in a week's stay in hospital to be deimapcted) and daily bloating which makes her look 6 months pregnant. She has seen a gastro consultant after a year's wait and they just keep prescribing her shed-loads of laxatives which is rather problematic for someone with an eating disorder. They refuse to consider a mind-stomach connection is causing the constipation / bloating eg IBS etc (btw she bloats even when she doesn't take the laxatives and we have tried cutting out dairy and gluten).

2024: Currently, she barely leaves house, cries every day, has stopped all hobbies and doesn't see her friends, She wears enormous baggy clothes to hide her stomach. She is maintaining her weight but cycles through binge-restriction with her eating and cannot bear anyone to watch her eat. She looks exhausted and there is no joy left in her. She is extremely anxious about her upcoming GCSE results as I am sure most of her peers are, but this seems to be on another level.

Most current update - I have put her on Ashwaghanda this week out of desperation even thought I know it's not technically allowed for under 18s. Ihave shelled out £100 on the Nerva app which she has been doing for 3 weeks so far to try and calm her stomach pain (nothing so far). She refuses to go back to CAMHS for counselling (and it would be a two year wait anyway so pointless) but after years of me pleading, she has finally consented to go to see a private therapist (first appointment is in 2 weeks)

I suppose my main question is should I take her to GP now and talk about anti-depressants or will they just say go away and try the talk therapy first? I get the impression from the NHS website that they are very reluctant to put under 18s on this sort of medication.

Does anyone have any advice or a similar experience? Thanks so much!

@myrtleWilson I think her dd had gastro issues post anorexia? My understanding is when they restrict eating it stops the motility of the gut and it sounds like your dds hasn't recovered.

Hi @Tramway23 and thanks @Girliefriendlikespuppies for the tag!

I'm going to repost a post from thread 8 when I talked about this - not because I'm lazy but I couldn't for the life of me remember the names of the meds she was prescribed. But before that, am sorry she's struggling, as you'll read (if you've not already looked at it) in Tabitha F's blog - it is a cruel irony of how the stomach responds in recovery - almost a final (hopefully) jab of the ED. DD had the most excruciating pain from her stomach issues in recovery. Prior to that, I had thought the pain she experienced of her skin feeling like it was tearing when she moved in bed was the worst ever but hey, eating disorders like to play top trumps in everything....

This is my post from thread 8 and then I'll add a 'where are we now' section

"First off, have you read this from Tabitha about stomach issues in recovery - its been shared on the threads before and worth a read.
https://tabithafarrar.com/2017/06/anorexia-recovery-stomach-problems/

My dd fell into this clause I think and after some months of distress and pain, high levels of laxatives having no effect and having to do irrigation at home, was seen by consultant.

• Restriction leads to a reduction in gut bacteria and a culling of all apart from the die-hard terminator-like bacteria who can survive on practically nothing. Podcast on this here. So when you start eating again, the lack of diversity in your gut may be responsible for the bloating, gas, etc. The important thing to note here, is that you have to keep eating in order for the diversity in your gut to re-establish.

First attempt was 'myota' - https://myotahealth.com/pages/our-science. - the principle of which I think from memory was to stimulate good gut bacteria to re-establish digestion. It worked for a while but then stopped.

The consultant thought a fodmap type diet may be of use but he didn't want to go down a route that in anyway touched upon restriction. He then prescribed her this https://enteromed.co.uk/ which is for IBS/diarrhoea but also (according to him) in lower doses is able to 'mop up' the immune cells which are preventing good gut health and therefore reduces bloating etc. She's been on this for a few weeks and it does seem to have helped - still does get some bloating but not the utterly miserable consistent daily pain she had before."

And now... she is in a much better place. I won't say fully recovered as my own personal opinion is that a little bit of the ED always lurks around but now she's totally in control. However, she still does suffer from occasional bloating - but we've been able to do an approximation of an elimination (without triggering the ED) to identify what we think causes her bloating - which we've narrowed down to palm oil variants. The good thing is she's no longer under the care of her gastro consultant and now we're on top of checking labels, bloating is hopefully on the way out. Do feel free to ask any further questions!

Thanks @myrtleWilson ! We have tried Myota and Symprove but they didn't help - although this was last year when she was on very high levels of laxatives (she has never had diarrhoea as a symptom always constipation so whilst I've looked at Enterosgel, I think it won't help as she has constipation??)

I hear what you are saying about the good gut bacteria - maybe it's time to try some probiotics again while she's not on laxatives (she keeps trying to come off them but then gets bunged up after a few weeks, the bloating however is a daily menace)

I have just recently come to the end of a fixed term contract and money is going to be much tighter for a while - are things like BioKult worth a shot do yo think or would it be a waste of time?

It has been 2 years now of constipation, bloating and pain for her - gastro consultant saw her in June, said to just be patient and take laxatives when she needed them. Wouldn't hear of IBS or food sensitivities or indeed anxiety playing a role 😭She cried for days after wards as she'd been pinning all her hopes on this consultant appt - all she wants is someone to say, OK here's what's wrong and here's how to fix it

Hi @Tramway23 dd never had diarrhoea either - just v severe constipation. She was on so many laxatives and had to self irrigation at home / it was miserable for her.
I've just clicked through to the enterosgel site again and realised Prof Yan Yaniakou who conducted the acute ibs-d study was my DD's consultant. I have a recollection that his trials - whilst focused on IBS and diarrhoea did show potential for re - activating gut health. Maybe worth mentioning to your consultant that you are aware of similar case under Prof Y's care and see what they say about enterosgel. It was a different dose than would normally be used...

We did the biokult too but it wasn't enough for us to get everything going (literally and metaphorically) but helped when we were making progress if that makes sense

This is super helpful, thanks @myrtleWilson

I will contact the consultant but it's usually a few weeks till they reply

In the meantime, I found this on a pharmacy website which suggests it can also be used for constipation / bloating

How Does Enterosgel Work?
Enterosgel is an intestinal absorbent that targets harmful bacteria and rids it from the body relieving you of any abdominal pain or discomfort. Whether you have IBS or diarrhoea, Enterosgel can provide relief without draining your body of water, vitamins and good bacteria.

What is it Used For?
Enterosgel can be used to provide quick and effective relief from the following:

Diarrhoea –This formula works to detoxify the body ensuring a quick recovery.

IBS – Enterosgel can normalise stool frequency and provide relief from constipation, one of the issues associated with irritable bowel symptom. The Microflora is paramount when it comes to gut health and Enterosgel helps to regulate and protect it.

However, the dosing amounts do not differentiate between the two and it just says:

For children aged 5 or older, the recommended dosage is ½-1 sachet 3 times per day.

Can you remember what the low dose was that your DD took?
It also lists constipation as a possible side effect so I'm assuming that's why you needed a lower dose! Thank you again.

just need to pick someone's brain. We are seeing the ED psychiatrist again early next week for review. They always ask about what's going on in the family unit when we go there and then we discuss how to deal with the challenges within the family and what to improve in terms of approach, communication, keeping the home happy etc. (it's some sort family therapy I recon). With H having left us for the entire Summer, having blocked me and is refusing any sort of communication, it's all very stressful for DD. hallucinations are back since he blocked me as she is picking up on the stress. he is refusing to ring either of the DDs and just sends WhatsApp messages. He refused to give us any money for the Summer even though he is the main bread winner as I am predominantly a carer for both DDs and only work PT (I have saving though - we are not starving but its adding to the stress). I just wonder in how much detail you would discuss it all with the ED team/psych. Her self harming stopped the night he left in July. On the one hand, I feel I need to be open, on the other, I worry I open a can of worms... is it better to just leave it at 'he is away' since there isn't an awful lot of support anyways if that makes sense. Thoughts? I really struggle to see a clear way forward and don't know what to do (in many ways).

I don’t know what the best approach is. I tend to be very open and honest but then I’m autistic and have a tendency to just blurt stuff out/overshare. It has on occasion resulted in extra support.

Gosh @Curlyhairedassasin. I can't quite find the words for your husband, but I'm pretty angry on your behalf.

If I were you I would be tempted to call the psychiatrist tomorrow or before the appointment next week and give the information about your dh before the session. We don't see a psychiatrist, but we see another health professional (I think they are a nurse) and I have done that before. The reason is that I worry that my dd will absorb my own stress as well as hers, but I don't want to be disingenuous in the session and talk about things which are obviously stressful or upsetting (as the way your dh is behaving is) in a way which glosses over them. Sometimes I think cognitive dissonance like saying something which is clearly upsetting but in a way which suggests everything is 'fine' can be tricky for my dd - we are both probably neurodivergent so neither of us do well if things don't match up.

Hope that makes sense. I'm so cross at how much your dh is letting you down, you don't deserve to be treated in such an uncaring way. Xx

Curly, I would send an email in advance of the appointment outlining everything - husband leaving, phone blocking, no money, self harm stopping, hallucinations reappearing etc. I would then let the psychiatrist lead the conversation in the appointment. I would hope that they will offer you regular family therapy as this is all too much for you to process alone.
Perhaps ask for confirmation that the psychiatrist has received your email so you know they have the information before the appointment- the NHS email system seems a bit hit and miss.
I’m so sorry this is happening to you and your girls

Curly I'd be really honest, I hope you have the strength to put yourself and your dds first and change the locks/refuse to have him back.

You can make a universal credit claim as a single parent, it might be worth posting on the relationship board for advice on finances.

He's a complete bastard and it's disgusting how badly he's treated you and your girls. You are better off without him.

Thank you @greydoor and @shanghai101.

Will put send email out before the appointment. I find it also easier to put things in writing. Not sure if I am brave enough to change the locks @Girliefriendlikespuppies. it's also his house. Can I even do it legally?

Has anyone's child been admitted to hospital and did it help? I know it would help short term but do you think it helped them get better? I guess everyone here doesn't have children who are better? We have weigh in today and they've said if she has lost again then she will have to go to hospital as keeps losing weight

@H0WDOESANYONEDOTHIS Mine was admitted. busy now but will respond later.