Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

LittlePickleHead That sounds good and worth a try. Anything to keep them put of hospital must be good.

In my area there are NHS day treatment centres for adults but nothing for under 18's sadly.

My dd would definitely benefit from attending a day centre for her age group where there were activities and some social stuff along with therapies rather than just being forced to sit and talk.

Camhs appointments probably work for some but my dd doesn't want to talk and be the focus of all attention and we both leave feeling awful. Dd now just leaves the clinic after physical checks.

I'm not bothered about her being discharged from camhs at 18 because they've not been much help and the adult services seems better, although I have no idea of waiting times.

Feeling very dejected and just need a rant.

DD had a short food refusal again yesterday after her therapy session triggered by her saying to her therapist that she might be happier if she was thinner, and the therapist saying she had lost more weight before and she wasn't happy then. DD took that to mean she hasn't lost as much as before and that's a bad thing.

I managed to talk her down and get her to have her snack but I'm struggling at the moment. We're starting again with DD mostly on fortisip and some snacks and trying to increase 'real' meals, but there's a lot of pushback and I'm really concerned I'm feeding the ED at the moment by not being tough enough. Im trying to use incentives (eg her phone is on a timer and she gets to use it after each compliant meal) but I'm so worried about a total food refusal again I'm not pushing it too hard or fast.

Private therapist has cautioned this may delay her recovery as it's feeding into this need for her to be I'll. ED therapist at the Maudsley had a call with me and DH earlier as she is concerned (and I wanted to ask about day care) and her feeling is we've got to have stricter rules eg no baby-sitting until she's eating the same portions as before, and not giving into her neediness of me eg sleeping with me, not wanting me to go into work.

I get that and it's probably right, but knowing how DD is behaving I know this will result in doing things the hard way eg food refusal, weight loss, a&e until she realises there is no choice. But I don't feel like I can physically or mentally do this with a full time, full on job and I'll need to take more time off. She asked my DH opinion as it's all falling to me and is disappointed we're not aligned as DH wants to take a tougher stance, but he's very much jellyfish/rhino approach (for those that have read the Maudsley method) and it really escalates the situation.

Im also apparently doing the wrong thing by adding cream and oil where I can as it's going against DDs trust, but she's lost nearly half a stone in a week and I just want to stop the weight loss in its tracks before her brain function deteriorates any further.

I just feel so down and confused, like im doing everything wrong but without any guidance or real help to do it right. It's so tiring (as you all know) to face a battle every mealtime and I have a DS9 and work to contend with on top of it all.

Littlepicklehead, no wise words but feel your frustration and confusion

LittlePickleHead

I'm sorry, it sounds so hard. Taking strict control is definitely key to beating ED but when you have work and responsibilities it's a huge struggle, not to mention the mental toll it has on you.

I added fats to help at the beginning when she was very underweight and still do occasionally even though she's now generally eating well, if she's had a bad day. I know people often disagree it's the right thing to do but it feels like the right thing for my dd and I could sleep at night knowing she'd had enough calories.

I hope you can find what works to motivate your dd so you can get some control. Be kind to yourself and try and delegate some things to your dh and maybe other family members and friends so you have the time and energy for your dd. It really does consume your whole life.

@LittlePickleHead I agree with @BagpussSaggyOldClothCat regards to added fats and oils - it is the ED you are battling, not your daughter and tricking the ED is absolutely fine in my book, be careful not to be caught out though.

Sorry to hear that you are having a hard time - no one understands apart from those with poorly DC’s. Work is tricky, I can only advocate time off if that is at anyway possible? A tough stance, withdrawal of privileges and activities is key - Life Stops Until She Eats - as hard as this is to implement you and DH must have a united front, the ED loves to play one parent against the other.

We survive day by day and make time in the evening when it’s not about the Eating Disorder.

Thanks all, it's good to hear from people who get it!

@D1ANA22 I've already had 5 months off work (came back early Feb) so any more time off would be unpaid which we can't afford. I got her to an ok point during that time which is why I'm finding this relapse so hard, because I know what going through the 'life stops' battle is like and I don't think I can cope with doing that alongside my job.

I've also worked really hard to get where I am and despite how great my company are, time off is affecting my projects and my clients and having lost all of myself for 5 months I don't want that to happen again. Maybe selfish? But the therapist also thinks it's playing into ED for DD for her to see I've given everything up for her.

If I have to I have to do full on 'life stops' again I will. I know I need to stop negotiating with her as the ED is winning.

DH and I have talked (again) and I know we need to be more united - we are mostly on the same page but since the relapse he wants to be tougher but just his style makes this seem more punishment rather than incentive/consequence.

ED therapist also thought we shouldn't be cancelling our holiday. So I just feel like I'm cocking everything up!

@LittlePickleHead I can say there are many things that we would do differently now, they are not cock ups but feedback and there is no manual to follow - no right or wrong in my opinion - we just keep going in the right direction with good and bad days.

My DH is more punishment driven - but between the two of you there is probably a balance that works.

I don’t enjoy my work so I can’t comment - however I do get losing yourself as this is all consuming, as your DD recovers you need your life as well for your sanity.

Little have you checked what benefits you'd be entitled to if you did have to take unpaid leave? Can you get signed off with stress? Or would that be unpaid now?

It's so so hard and definitely don't beat yourself up, I think every single parent caring for a child with an ED has felt like you are feeling now. I know I felt like I was doing everything wrong and felt very angry with dd/the situation which taken to the extreme would mean giving up my job and loosing our home. I was lucky that school was enough of an incentive to keep my dd ticking over.

Therapists are the professionals and they are there to advise but you know your dd and your family dynamic the best. You must to do what feels right for your family regarding your holiday.

We've had some good advice from our therapist, some not so good and some that I feel damaged my relationship with dd because I was trying to please the therapist and not listen to my own instincts.

We are the same D1ANA22. As soon as the evening meal is done we relax! It took a long time to learn to switch off but it is essential.

I'd highly recommend the 'Parenting Mental Health' page on Facebook. It's not just for ED but there's a lot of good advice on caring for a mentally ill child, although a lot do have ED as part of a spectrum of other issues. It advocates Partnering not Parenting which is helping your child recover from mental illness by walking beside them helping them make their own decisions and not being the 'parent' telling them what to do. Mental illness is often triggered by a loss of control and Partnering helps them gain control. Obviously that doesn't quite work when refeeding at the beginning as you need control, but I've found it really helpful now we are at the stage of recovering and rebuilding our relationship. The lady who started it is Suzanne Alderson and her story is really inspiring. Her dd had many issues including ED and is on some of her videos giving her own insights. My mindset towards dd has changed after watching her videos in the group and reading her book 'Never Let Go'.

There's another group you can join through that group called 'PMH wellbeing' which is to help parents and carers with their own mental health issues. We all suffer to a certain extent along with our dc.

Ladies, good morning, it has been quite a while since I have posted.

DD14 was urgently referred to Camhs in Sept as she weighed just shy of 5 stone (73% WHF - she is very short). They were sure she didn't have an ED as she kept saying she didn't think she was fat, she wanted to gain weight and had not meant to under eat but had had no appetite. The diagnosis was weight loss caused by extreme stress and anxiety. She went in for quick weigh ins (first fortnightly and then they gradually increased the time between them to a month and then two months)

Between Sept and Feb, she did make a real effort and put on a stone. Her periods also started. We were all so relieved - she was still very petite but always has been and I dared to believe things were going to be ok. However there was no question of her following their meal plan, she had to be in control of her food / portions but I let her do it because she was successfully regaining.

Around Feb, she hit a road block. She has been suffering from severe bloating throughout the weight gain and believed us at first when we said this was super common and would only last a few months. She clearly started to think Sod this. She says she looks like a freak - she wears giant hoodies all the time and has become even more socially reserved - refusing to meet friends out of school etc in case they see her tummy. Gradually she has been eating less - no more after school snacks, missing pudding etc, no more milky drinks. Her weight gain stopped and now she has lost 2 pounds since Feb - nothing dramatic I know but it's a slippery slope when she should be gaining as a nearly 15 year old girl who weighs only 6 stone!!

Has anyone had any success with collagen repair supplements for the gut in terms of bloating for people recovering from being underweight? Or is it all just expensive snake oil? We have tried all the other stuff - probiotics, slippery elm etc. She is so desperately miserable with the bloating and says things like "What's the point - I hated my body and had no confidence when I was really thin and did what you said and ate more and now I still hate my body and have no confidence"

Camhs can't see her until 23 May but they have said they now want to do another ED review and may potentially change their diagnosis. Having read all the stories on this thread about how useless they can be, I don't know whether this is a good idea or not... They have told her openly throughout "You do not have an eating disorder, you are not like those other girls". To turn round and take all that back now may well just make things worse I think?!

She has also refused point blank throughout to see a therapist (Camhs or private) for dealing with her anxiety - she says talking to people about it just makes her feel 100 times worse.

basilbrush. I feel for you. Yes the bloating is really common and probably not helped as she's just started her periods as well. It can take a while for it all to settle down but to a young person that's struggling with how they look it's not what they want to hear. My dd had buscopan but I don't think it helped. Only time has helped.

Whatever happens with camhs and her diagnosis she obviously needs to start eating properly asap before weight loss causes further mental issues. If she's used to sorting her own food it'll be hard to get control. I was in exactly the same position with my ultra independent dd who was 16 at the time. We struggled with the eating plan from camhs so I took a risk and put it in her hands and asked her to write her own. We had to negotiate a bit but eventually came up with meals that she was happy with and turned that into a weekly meal plan which we are still using a year on.

My dd doesn't engage at Camhs anymore. It was causing more issues for her mentally. She has her physical checks then leaves me to talk to the therapist. There are some good self help books for teens self esteem if she's dead against talking about how she feels. Type 'teens self esteem' in to Amazon and loads come up. I send my dd inspirational quotes and any uplifting videos I come across and just try and keep her as motivated as possible - as well as getting the food in!

Thank you bagpuss - v useful!

@basilbrush my Dd is now under consultant care due to damage to gut/intestines due to her anorexia (including severe constipation and very painful bloating) I'll double check what meds she was prescribed - first lot worked for a bit but then regressed and she's on second treatment now - it may be helpful for you in any conversations with GP etc - I'll post back soon

@basilbrush am back with proper medicine names...

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.

I remember Myrtle posting this before from Tabitha farrar. DD was exactly the same and because she's so petite, the bloating looked huge!
It's all balanced out now though.

myrtleWilson thank you so much for the info! I have ordered some Myota to see if that works to start with...

She has been seeing the GP regularly - they tested for celiac (negative of course) and initially prescribed laxatives which she took for several months. Now she takes a daily stool softener and a prescription anti-spasmodic (Mebeverine). This does seem to have reduced the pain she was feeling but she still feels constantly uncomfortable and is still extremely bloated

Completely out of character - DD left the house at 8pm, turned phone off and not answering messages or calls and had not returned by 9:30pm. We rang the Police, DH found DD at 11:15pm, she was walking in a direction away from home - no idea where she was going. Has this happened to you and what did you do?

@LittlePickleHead I love my job and giving it up for 5 months has been very hard mentally as well as financially. DH couldn't do his either because DD was so full on it required 2 of us, the last 5 months has been very punitive so I totally hear you. This is my second week back at work. No advice except that I am very scared about relapse too so sending you good vibes you are get ahead of it asap.
There is a CBT exercise where you walk out - literally step out - possible outcomes from choices (ie eating vs not eating) and looking at where you are in 1 week, 1 month, 3 months, 6 months and a year. I use it with students who are, say, procrastinating or chopping into their sleep, and it's quite stark how quickly things go bad, it make them think. Might be worth doing with her?

@basilbrush

What @myrtleWilson says here is very relevant:

• 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.

I know a lot about bloating from a gut bacteria perspective and the pill probiotics don't work. Too many die or aren't the right ones.

Also what I don't know about the FODMAP diet isn't work knowing and while I'm happy to help anyone I can tell you it is an absolute ball ache and if you can avoid it, do. The single best thing my (FODMAP) DH did was get proper kefir www.chucklinggoat.co.uk - absolute game changer. The taste is horrendous but is at least calorific!

Also, DD had peptic duodenitis caused by AN and the bloating has just gone down now, 6 months later.

Thanks, @WhatHo- I hear you about those aching balls and really do want FODMAP diet to be very last resort!! Hoping to avoid additional food restrictions if at all possible

Has anyone seen this advert? It made me sob but so really effective.

@NCTDN Just watched it now and crying too - very powerful

I know the advert is about the perils of social media but it also feels like it's blaming parents for buying a phone.
Maybe it just hit a nerve 😞

My dd got poorly due to bullying, being ostracised by so called 'friends' and comments about her body. I wish the ad had included some of those elements because it's rife in schools and I wish schools actually did something about this hideous behaviour that wrecks lives.

@BagpussSaggyOldClothCat I know what you mean, the causes can be so complex and multi-layered. We didn't get our DD a smartphone until her 14th bday and by then she'd already been referred to Camhs for being underweight...

I can't watch that video for some reason but think I get it the general gist.

If I had my time again dd wouldn't get a phone until she was at least 14, they're toxic in so many ways.