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

Oh god Nan I'm so sorry, this sounds so traumatic for all of you. Bless your son and birthday wishes from this internet random being put out into the ether for him. The stop-start hospital hokey-cokey does sound like madness.

I often think about that BEAT stat about how little is spent on ED research per sufferer in comparison to breast cancer (I think it's something like 15p vs £15 but I could be wrong). The hard thing about dealing with EDs is that you never have any sense that anybody knows how to fix it, no established protocols.

Yeah who can help to fix things.... I have tried since September last year when I realised dd2 was purging again .
6 months later and 6 kg loss in weight and much more frequent purging; I can see her slipping down further , I've lost the battle. Waiting till she collapses

@Threeyearsalready So sorry to hear this. Is she still under CAMHS or an ED service? I'm not an HCP, but think if they can take bloods they should be able to spot whether she needs urgent (physical) medical intervention before it gets to that stage?

Yes had bloods and they were luckily fine.
But nothing is improving so just a matter of time...

How's everyone doing?

Three years how olds your dd?

Nan hope you're okay, handhold here if needed.

Things here remain settled, dd is doing well at college, work experience going well and has a nice new boyfriend.

It's the 3 year anniversary of when dd first started restricting and it has easily been the hardest three years of my life. Im hoping and praying we are almost out the other side and I hope my posts can offer some reassurance to other posters still in the midst of this shitshow that it is possible to drag them kicking and screaming into recovery!!

My dd never accepted she was ill, never accepted any of the professionals help, had loads of ED behaviours including cold showers and trying to be as cold as possible to induce shivering (burns calories) holding food/drink in her mouth, spitting, crumbling, smearing and hiding food, she lied to my face, she was unbelievably cruel in using words to hurt me and her grandparents (completely out of character) she developed OCD and she had completely shut down emotionally.

Now she is pretty much back to the lovely, kind, thoughtful girl she was. I got myself in a state about something I had messed up the other day and dd came over and gave me a massive hug and told me it was okay 🥰

I think for us in the end, weight gain has been the main element that was needed, that and time.

Girliefriendlikespuppies

I'm so pleased your dd is doing so well. Her giving you a reassuring hug must be absolutely wonderful after all you've been through. It really does give me hope 🙏

Things are very hard here. We are just trying to get through each day as unscathed as possible. Dh and I are going to his parents soon to take MIL gifts for mothers day. Dd won't come with us (not a shock) but she's refusing to even come out of her room to sign her card. I'm dreading tomorrow. I couldn't give a monkeys about a card or gifts, I just want my dd back. I miss her so much it physically hurts.

On the plus side she's eating well and I'm thankful for that every day.

Hi @Girliefriendlikespuppies . So pleased your DD is doing so well. It really gives me hope. I also saw my cousin's daughter today, who, after years as in an ED unit is now a normal weight and close to qualifying as a nurse! My DD unfortunately is still very, very ill. Poor little thing is doing her best to comply (under threat of force feeding), but it's so distressing for her. The hospital have threatened to take the door off her bathroom because she keeps going in to do star jumps or bang her head. On Thursday she threw her Fortisip over a psychiatrist and absconded from the hospital (found in a car park hiding behind a hedge in the pouring rain). Good news is we are having a orientation visit to a Unit on 28th (though still no news about when she might be admitted.)

My worry is that even if recovering now, DC will run into problems in the future. Was reading a lot about how genetics play a very big role.
DC1 who suffered from anorexia during lockdown refused help but "snapped out of it". Thriving .
Dc2 struggling more, and generally of more anxious nature and not sure how she will cope in the future.

Threeyears I think if they can get through it when younger and develop some other, hopefully healthier, coping strategies then there's no reason to believe it will always be an issue for them.

We went out for a Mother's Day meal Ystd, it was nice but dd struggled a bit, the menu was calorie free which I was relieved about but she still found it stressful to choose something. We definitely still have a little way to go before being free of it completely.

Nan I'm sorry your dd is so unwell, it must be unbelievably stressful and upsetting. I hope the visit to the unit goes well.

@Threeyearsalready Statistically, given their age, there's a really good chance of complete recovery. I think you are right to stay vigilant though - and to help them develop coping skills now they are recovered, that they can draw upon if they do start to struggle again.

Sending you and your dd lots of love Nan ❤️

@NanFlanders
So sorry your DD is so distressingly unwell.
I hope she can get a bed soon.
Its good that you will have an opportunity to see the unit before she goes.
I found the transition from paediatric ward to ED Unit fairly shocking partly as they were so much stricter / more rigid on when a NG feed is required and what quantity is given etc.
I understand why this has to be the case, but just wish I’d had a bit more preparation for what it would actually involve before it happened.
It’s so hard. Sending good wishes to everyone.

@Frankie291 Thanks for sharing your experience. Which unit is your DD in? The unit DD's on the list for (Ancora House) won't take people on NG feeds. We are worried that she might get too sick to be accepted (ironically). She has so far this paeds admission managed to avoid force-feeding - which traumatised her last time (understandably - 7 people holding her down 😢) She has accepted one NG feed today, but pulled the tube out straight after. I do hope your DD is settling in and the rest of the family are coping. Hang on in there.

@NanFlanders
We’re in London. How does that work then without NG ? What happens if they’re not eating / drinking to plan do they go back to Paeds?

Thinking it’s maybe a general ward you’re waiting for rather than ED specialist unit?

I really hope you can get her in the best possible setting as soon as possible.

The ED unit that my DD is in seem to be set up to manage a fairly high level of physical monitoring with refeeding bloods/ daily ECG etc.

I know how you feel with the cycle of either being not quite ill enough or too ill for various settings. It’s a frightening feeling.

Even once my DD was under section the Paeds ward weren’t really happy to restrain her once her hypoglycaemia had stabilised.

Whilst she’s not happy in the ED unit , I’m a bit reassured that she is in a specialist unit , hopefully getting the correct intensive support and I can also sleep a bit better knowing she’s hopefully in a safe place rather than the constant high alert of what might happen to her if I took my eyes off her.

@Frankie291 That's a good question about the NG tube. I'll check on our visit. Ancora is a child and adolescent mental health unit with (at least) four beds reserved for ED patients. ED patients have some specialist activities (e.g. body image therapy), but education sessions etc. are shared (as I understand it).

>Even once my DD was under section the Paeds ward weren’t really happy to restrain her once her hypoglycaemia had stabilised.

Yep, absolutely. Apparently there was lots of discussion at teatime yesterday about whether an NG tube could be done under restraint, as, although DD has very low weight, her heart has now stabilised (thank God!). Clarity this morning from the psychiatrist that they will use restraint given her health in other respects.

Pleased to hear you are reassured at least. FWIW, my DD's friend was initially miserable in a specialist unit, but now credits it with completely turning her around and teaching her lots of coping skills: she's now vlogging about how good life is without an ED!

@NanFlanders 2 so tough for you. I really hope your dd can take comfort from her friends vlogs - maybe coming from a peer might have a more positive import?

Nan, the waiting and not knowing must be so difficult

Really sorry Nan, so shit. You go to bed thinking about it all, you wake up thinking about it all.

On a different note, a belated big smile from me about Girliefriend DD doing so well. We've both been here a long time, haven't we? With different views on best ways of recovery but united in our love for (and occasional fury at) our girls. You've been so supportive throughout and it really makes me very happy to hear that the clouds are parting.

Aww thanks valley 🥰 we have both been here a long time, I think it's good to have different approaches and perspectives, there's definitely always more than one route to any destination.

DD16 is weight recovered for 9 months and is approaching her GCSE’s - with the anxiety she has reported to school suicidal idealisation, teacher has scored this as low due to DD not talking about the means to end her life. I am beside myself - what resources are available (ie support contacts, protective measures, links for daughter) - I have highlighted childline and nspcc. @myrtleWilson I imagine you have information for this? Daughter speaks to a counsellor at school, what else should I be asking them to do? Thank you.

D1 I wouldn't panic too much, I think most teens who have had or are recovering from anorexia have had suicidal ideation at times 🙁 I know my dd has.

It's good she is talking about it and that the school have let you know.

You could speak to her GP about whether she needs a referral to Camhs but personally I wouldn't rush to do anything straight away. How does your dds mood seem to you? Is she okay at school? Is she making plans with friends? Is she eating okay?

These are better indicators of where your dd is at mentally imo.

Hi @D1ANA22 -am pleased your DD has maintained restoration and am sorry the teacher hasn't recognised the strength (and potential impact) of your daughter's suicidal ideation. I've tried to access the ED resource for school nurses which Hope Virgo was involved with - I've requested a copy and will let you know if it has any particular nuggets. Is there a specific request that you'd like the school to put in place - is it about extra time in exams or additional pastoral support in the run up?

Thank you - yes, rest breaks are in place for exams and I will put in a request for extra pastoral care. Her general mood is OK, she is making plans with friends and eating OK. There have been a couple of stressors this week which have heightened her anxiety at school which I will raise again.

Relate to so many of the things said here on the thread. DD, 15 was diagnosed with anorexia in November. As a family we're absolutely torn, arguments every meal time and all I am trying to do is what is best for my daughter and she and even my husband a lot of the time can't see this. DD I can understand as she is ill but my husband is just saying let her do what she wants to do and not to keep fighting against it. she's currently at 49.3kg which is underweight for her height and age but husband is giving up on trying to make her gain anymore. what would you do in this situation, I'm so lost.

Some positive news I've found an excellent podcast about eating disorders by the BBC and is presented by a young girl with lived experience but now recovered. Episode two she spoke to her family and I related to almost EVERYTHING they were saying. It was so moving but really just is excellent and raw and speaks so much truth. For anyone interested it's called The Weigh Up and the presenter is on instagram: mollyerinsmith. I sent her a message to tell her how much the podcast helped me and my family and to my surprise she replied with such a nice message!

Hi plantmum22

Yes that's an excellent podcast. I'd love for my dd to hear it as the girl is so inspirational but as I listened I identified a couple of her triggers so I'll wait until she's more recovered.

I'm sorry you're going through this with your dd. It's really vital that you and dh are united in how you deal with the ED to give her the best chance of a good recovery. It's important your dh takes on board that letting your dd carry on losing weight will see her become very physically and mentally ill - ultimately it's a life threatening illness. Eva musby videos on you tube are good for understanding the illness and there are resources for parents/carers on the Beat website that are helpful.