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

[Curlyhairedassasin]

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

Hi @Cantfindthewordsddstruggling I do understand what you’re saying. I have had those feelings myself. And if dd didn’t exist. I never would have had all the love and wonderful experiences I have had from and with her. And her current mental health struggles will pass. Our dc will get through this.

I have been thinking about you and your dd. You have not failed your dc. Your dd is mentally unwell at the moment. This doesn’t mean she will always be ill.

Have you reached out to anyone? How is your dd?

@Mummyoflittledragon I have tried to get into see the gp but can’t get an appt
dd is doing ok. Cracking it that CAMHS have said to lock up anything she could use to harm herself. Dd acts like dh can do no wrong and it’s always me that causes problems. The call from the CAMHS psychiatrist was as much use as a chocolate teapot as just said to use existing medication we had when the call was meant to be to discuss a more suitable med to use when in crisis.

Hi @Cantfindthewordsddstruggling - so sorry to hear how you're feeling just now. Your thoughts resonate with me, I have definitely had similar ones. It's so hard not to feel responsible for everything our kids are experiencing, but it's not really 'true' - we all know in this thread how hard you have worked to support your dd. Supporting someone with an ed is just about one of the hardest things you can do in my opinion, they turn the person into someone you don't know properly, and even someone it's hard to like or love any more. None of that is your fault, it's the fault of a powerful illness.

It sounds like taking care of you has to be a priority too just now. Do you have someone in real life you can talk to about things, and who could help you? How about calling the BEAT helpline? I know beat also have peer supporters for parents and can set up more regular calls - maybe that might be something that could help?

Sending you a big virtual hug. Completely get just how hard all of this is. Take one day at a time xxx

Ps - my dd did the same thing and behaved like I was the problem. She even said (screamed) it a few times - "everything would be fine if you weren't here" and "why can't you just be like dad?!?!". But it was because I was the main one driving things, and my dh would be more likely to give in - of course the ed liked that better. She is much better now and we are closer again, it was just an artefact of the illness. Xx

Yes @Cantfindthewordsddstruggling so many times probably around this time last year I had similar feelings, embarrassed to say I even thought not being here would be easier. But I couldn't leave my other dc who didn't deserve any of this. Fighting the ed is the hardest thing we've ever done as a family. The clinic said to me a few weeks ago if they told us we'd be where we are now I would have snapped their hand off and it's true, things do get better. We are all stronger, supportive of each other and closer, looking from the outside no one would know what we've been through and continue to challenge.
This weekend asked for chocolate fudge cake - I never thought I'd hear those words again. Hang in there, you can do this. ❤️

@Cantfindthewordsddstruggling
It’s totally normal that you are the one being berated and targeted. It’s because you are the constant. Always there, always fighting for your dd and consequently fighting the ED. The ED wants you to be more like your dh and more like mine. Who does dd turn to when she isn’t getting an immediate yes to something? My dh of course. She pesters him and he gives in. And in so doing he removes any leverage I am using to work towards a goal and ‘feeds’ the ED. What’s not to love about that from the ED’s perspective?

I’m sorry the psychiatrist wasn’t any help. Idk if your dd will consider taking the existing ones now. Please do contact BEATS and / or any of the resources from MIND, the Samaritans that I posted upthread. And try to get on the phone first thing to get an appointment today with the GP if that’s how it works round where you live. Hang on in there. Xx

I’ve had DS assessed by the GP. His observations were considered okay (no bloods done but BP, HR, and temp all okay) They told him his back pain is due to laying in bed all day so he needs to get up and exercise (super helpful comment).
Had a long chat with him about how maintaining a low weight is negatively impacting his life. He agreed but said he has no plans to increase his intake as it’ll make him fat.

ED team haven’t ever actually diagnosed an ED disorder and seem to think the main issue is depression. They offered medication and CBT and DS has declined. He’s refusing college too.

Just not sure how we can move forward. I know the ITP at the Maudsley is a long shot and won’t help right now but I’m just clutching at straws really. We don’t live in London but a close relative has an apartment in London they only use half the time so I think given the situation they’d be happy to let us stay.

@Cantfindthewordsddstruggling yes, I understand how you feel. I think it’s an understandable reaction. This isn’t what you imagine life will be like when you have a child. I hope you feel better soon and get the help you need.

@WoodenTrain
Well done on getting your ds to get these done. And well done to your ds. Sending big hugs even if he doesn’t want them. Still you don’t have the full picture and I really hope that it is just lack of movement. Poor lad.

I’m doing the Jenny Langley 5 part workshop atm and part of this is about how to talk to a resistant child. She’s absolutely fab. It’s all a bit overwhelming. But I would recommend. She also does ones on autism.

@Mummyoflittledragon

do you have any online links to these courses? looks like something we can do with.

@WoodenTrain
is there any chance DS would come to hospital with you? they will do an ECG and bloods. Even if it's just for reassurance. Sounds very hard on your end.

Hi All, I’ve been on this group for three years since DD was diagnosed with AN. I need advice on behalf of a friend, her DD10 is restricting her food, the GP has signed her off school and my friend has presented her DD10 to a local eating disorder unit who have bounced her back to the GP for intensive weight monitoring. DD10 has lost a further 1kg in the last fortnight, calories less than 400 a day - obs were not taken at the ED unit meeting yesterday. ED unit said that as she has not mentioned body dysmorphia then she doesn’t have an ED. I have advised my friend to go to A&E at Alder Hey rather than the local hospital, what should she be doing / saying and what would push for an admission - my DD14 was admitted for refeeding and that kickstarted her recovery and I believe that is what my friends daughter requires. All advice welcome.

Also DD10 is 28.6kg and 140cm tall, born in 2014, what would her wfh be (the ED unit did not calculate this).

if you have the month I can put it through the calculator. year alone is too unspecific.

@Curlyhairedassasin

https://www.charliewaller.org/blog/eating-disorders-support-for-families

You’ll find Jenny Langley on the above website. Scroll down to see her contact details. I emailed her directly with our circumstances and she provided me with details to the relevant workshops. As a mum of a DS who had AN she understands it in a way I found other counsellors cannot.
She has workshops on perfectionism and ASD as well and how these relate to the ED.

Thank you @Shanghai101 !

@Nomoreplease23 just because there is no sign of body dysmorphia does not mean it isn't an ed, my son was the same. No child should be losing weight, and I'd get your friend to look up the meeds guidelines online and see how many of them her daughter meets. When she goes to hospital or back to gp/clinic she'll be armed with more knowledge and she can state the guidelines so should be taken more seriously. Fingers crossed for them

@Curlyhairedassasin thank you - DOB November 2014. My friend has the MEED checklist, on Friday Alder Hey were ready to admit her DD10 but then at the last minute they said her obs were satisfactory - I suspect there were no beds. Now the local hospital ED unit is not engaging her.

@Curlyhairedassasin apologies DOB Nov 2013, DD will be eleven next month.

I see you’ve got the info now @Curlyhairedassasin Jenny is very quick to react. She will provide a lot of info very quickly. She does a fair few seminars on a rolling basis and she’s so positive, is happy for you to do the seminars more than once as she appreciates it isn’t easy to absorb all the information the first time around and so forth. It seems like nothing is too much for her and she will answer you if you reach out individually to her - I haven’t but she speaks about people, who have.

As Shanghai says, she has a unique perspective on this because she has an adult ds, who was hospitalised and recovered from anorexia. She is highly articulate, brilliant at coming up with ideas, professionals are also in the zooms so she pulls on their experience to make the sessions even more informative.

Jenny was involved in creating the New Maudsley approach so she has a wealth of experience and expertise. I can’t express enough what an amazing, loving and generous person she is.

This is the series I’m on atm. Yesterday she said she’d secured funding to continue for a while and I think she runs this course monthly but she will tell you the next one if you email her. https://newmaudsleycarers-kent.co.uk/carer-workshop-dates/ She also runs a monthly carers meeting. That was yesterday evening and has a guy working with her, who runs a monthly male carer’s meeting, which is tomorrow, Wednesday evening 6-8.30pm. That apparently has a very different vibe being specifically for men.

Jenny also seems to do regular one off seminars, which she repeats regularly. I did her one on autism and ED a few weeks ago for example. When she emails you, she will also probably also tell you what’s coming up and add you to her mailing list.

Very likely. DD really would have needed an inpatient bed a at some point and team admitted there is no point referring as there just aren't enough beds.

WFH based on Nov 2013 is 83.78%.

Thanks all, really appreciate everyone who has taken the time to reply. I’ve still not been able to get into the gp. Had a few other curveballs thrown today and over the last few days that have not helped. Had a bit of a cry which has helped, it was a song that started the floodgates. Is it wrong to just want to curl up in a ball and go back to bed once I’ve done school drop off in the morning? Could not do that today as had too much to do.
wish this monster never entered our lives

@Cantfindthewordsddstruggling It is fine to just go to bed and take some time for yourself. You’re emotionally exhausted and need a reset. I have chronic fatigue so spend a lot of time in bed. Every day in fact and am not well enough to work so this thing, which has entered our lives is very draining. I have to listen to my body and I would advocate you do the same as it is something, which is essential for you to be able to keep going.

As for the GP, with mine there is an online system, whereby you input your request for an appointment within the next week. There are several ways to get an appointment with my GP practice. So, a) call at 8am on the dot and keep on calling as it is often engaged until I get in the queue to make an appointment, b) do the same but online, c) input a request online for the next 7 days - the GP will prioritise if the request is seen as more urgent, d) book a routine appointment, which is normally about 3 weeks ahead. There may be more than one way to get an appointment with your GP.

I am around if you want to talk off board. X

Things are going downhill here. DD lost weight and declared in Monday in clinic that she has firm plans to take her life. School is now refusing to have her. We (in reality this falls into my lap alone, DH at work as usual). have to provide 24/7 suicide watch including that night. We had meetings with a crisis team yesterday and later today again. Social services came out yest too as school reported my for letting the SH continue and opened a case (though they appeared understanding of the difficult circumstances), and work are getting fed up with me. I don't understood why they don't just admit DD if they think the risk is so high that I need to watch 24/7 over her. I am so exhausted and overwhelmed. It's too much. Anyone been there? Can I insist on an admission? We discussed admission a few weeks ago and case worker said impossible to get a bed and the wait is months in any case. But people here get beds all the time in ED units. Surely not everyone is waiting for months? She needs intense support around her MH and her eating. Weight went down about 1kg last week. She is in a very dark place. I don't think I can give her at home what she needs, not with working (though I expected to be let go any time now) and looking after DD1 as well. I can prevent her from committing suicide but nothing else.

@Curlyhairedassasin This just sounds too much for you. It would be too much for anyone. How can you possibly watch her 24/7? I was advised to use the words in verbal and written communication "I cannot keep her safe". In my experience, teams don't like referring - units are distressing for the young people and results aren't great (but then it's only serious cases that get admitted). But they should keep her safe. It isn't the same for everyone, but I don't think my DD would have turned around without an admission.

@Curlyhairedassasin We got told the same about beds, but once the decision has been made to refer, things happened very quickly.

Thanks @NanFlanders they don't seem to care how I cope as long as they ran shift responsibility to me and not having to fund inpatient care. I barely slept last night and just cried. I just have nothing left in the tank. I hate this illness.