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

[Curlyhairedassasin]

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

@Glitterfarti
Amazon sell child sized cuffs. Maybe there is a suitable one for your machine

I also do not think you should just be taking the GP advice especially as your dd appears to continue to be losing weight. Letting your dd go feels perhaps as though it is rewarding the ED as she has no incentive to work towards being allowed back at school… I am presuming school is something she really wants to attend. I get it’s really really hard when you’re in the midst of this.

As for getting a private assessment, I have decided against it with dd as I was told by the private ED coach we are consulting that her likely autism is confusing the issue as she doesn’t have the normal fear food responses. The coach said that it is likely dd also would be told by them that she doesn’t have an eating disorder (which would be extremely damaging for dd’s health as we are still feeling the repercussions now of dd being told that by CAMHS approx 3 months on). I do think it would help dd though to have a diagnosis.

What are you hoping to achieve from a a diagnosis? For me, I would like dd under CAMHS so we have access to help and as I said it would be useful for dd. In my experience of everything else it seems unnecessary. eg When dd sat her GCSEs earlier in the year, the evidence the school sent the exam boards was accepted even before the GP produced a letter confirming the situation. When we called an ambulance to dd a few weeks ago, the crew accepted my say so that dd has anorexia and was discharged undiagnosed (pretty obvious when you look at her). The GP also accepts this.

If you have specific issues, you could still contact CAMHS for advice. In my experience the nurses are brilliant and a lot better than the people doing the initial assessments. We have a 6 month window to get dd back in so during that time it appears I have access to the nurses over the phone. Maybe it’s the same with your service, especially if you raise a PALS complaint, which I have when dd was discharged.

Sorry I realise that this may read as I am saying not to bother. That isn’t what I am trying to say at all. Rather this info is to explain the pitfalls we are facing in case it helps you.

Thanks @Mummyoflittledragon, I’ve been on Amazon this morning. It sounds like we’re in a similar situation with potential autism complicating matters.

Without a diagnosis we can’t take any more time/flexibility from work as we’ve been trying to manage this for nearly two years and goodwill has run out - if we could say she has AN etc they would possibly let me leave at lunchtime to support her - currently I’m not getting home til around seven so can’t supervise activity/snacks after school and I’m already frazzled by dinner.

A diagnosis would mean we could potentially claim financial support so I would be able to reduce hours at work too.

@Glitterfarti re diagnosis and financial support - are you talking DLA or PIP? Neither are based on a diagnosis. Just in care needs. If you haven't applied yet (DLA goes up to 16, PIP is for 16 years and older), please apply. Your DD needs so much support and will meet the threshold. Don't be put off by the lack of formal diagnosis. You really don't need it. I can post some links with websites that help you fill in the form depending what it is (DLA criteria and form is different to PIP).

@Curlyhairedassasin oh, I didn’t realise that! I will take a look when I get some downtime…

@Glitterfarti I see. I really hope this works out for you. Idk if you can prewarn the assessor. Or if you can pay to speak to an ED specialist first for advice on how to handle the situation.

As for school and food, I find texting dd less confrontational. Dd was allowed her phone under reasonable adjustments. I was sending a text to dd every day by break time saying how much I love her and to remember to eat varying the content such as she needs the energy to learn / concentrate / have fun with her friends (at this stage she was eating something albeit not much 3 times a day). It definitely helped.

Dd is now on 3 meals, 3 snacks. I send dd with the same snacks every day and she buys a meal deal for lunch now she’s in 6th form. If I still needed to do this, for me this would mean 3 texts. IE 2 snacks and lunch.

Hi, does anyone have experience of ED and ocd contamination?
Dd has started obsessively hand washing and talking about dirty things - but bedsheets are not dirty....changed 3 times in a day.
No idea where to start....
Docs again tomorrow - hoping to get some medication

Hello everyone- I’ve just stumbled across this thread. My youngest daughter (16) has been diagnosed with AN last April. She probably started restricting the summer before that. I’m in Ireland but the approach we have be given to take seems to be the same for many of you. 3 meals and 3 snacks etc. My dd though is very resistant to outside help, she refuses to come to 90% of appointments. She also has autism with selective mutism and just refuses to engage. She’s also not going to school. I go through very different emotions coping with it. On the one hand she is thin, but not dramatically so - 5 ft 6 and 54kg (with baggy clothes on). She does eat the 3 meals, usually but the snacks seem to be impossible to get into her. Just when I think things have been going ok, I find that she has been chewing biscuits etc and spitting the debris into plastic bottles (sorry!). I’m trying to enforce the only eating where we can see it but it does slip and then I find the stark evidence of the eating disorder. On top of this my eldest son (20) who lives with us, has had significant mental health difficulties (psychosis and previously substance abuse). Inevitably when our attention is elsewhere my dd eats less. I’m exhausted from dealing with it all and just can’t see any real improvement. I know that we tiptoe around her too much, but being very strict has resulted in dd self-harming (hitting herself, cutting and pulling her hair out). She is also excellent and pitting myself and husband against each other around food when it can work to her advantage-one of us cooks the wrong way etc, uses different ingredients to normal- so she has an excuse not to eat something. It’s exhausting!

@Spendthrifting so sorry that you find yourself on this thread but there is a lot of support here.
I’m not really sure what to suggest but it is good that your DD is not yet physically compromised and hopefully you can find effective help before that happens.
My DD, also neurodivergent, carried along in this manner for years during which time the AN became deeply entrenched. It wasn’t until things went wrong for her on a personal level that she started restricting heavily and became dangerously unwell in a matter of a couple of months. And once the weight loss starts in earnest it is quite hard to stop it. She needed intensive treatment to start recovering and it took her quite a long time to engage with therapy so it has been a long slow road back to health, complicated by the fact that by the time she reached the top of the waiting list she was almost an adult and was therefore transferred to adult services where they are given much more autonomy. And family is considered less important.

I often think what would I do if I could go back to that time again, before she became really unwell. I know now that AN is not really about food but about feelings so I would probably get her some help for her autism, no matter how much it cost. Therapy that could help her to understand who she is and why she feels the way she feels might have helped. She attended CBT sessions at our local ED unit but it wasn’t tailored to her needs and she did not engage with it so it was completely useless. so my advice for what it’s worth would be to get an autism counsellor and see them weekly. Hopefully, after a few sessions she will see a benefit in it and will engage. I would do this now though before her weight drops and becomes harder for her to function mentally. if however, she does not accept that she has autism then I’m not sure what to suggest other than for you to go to the counselling sessions and get all the tips and help you from the counsellor and then try that into your everyday life. I know that’s an awful lot to ask of someone looking after two children with complex mental health problems but from my experience I can’t see what else we could have done that might have helped. Wishing you strength and good luck too.@Spendthrifting

@Shanghai101 Thank you for your response. I suppose sometimes I just feel so weary because we don’t seem to be progressing. Having said that, she was losing so much weight before and eating next to nothing- now she has sort of stabilised. At one stage she was weighing chopped apples and eating that with a spoonful of protein yogurt, and nothing much else for the day. The psychiatrist explained that the less they eat the more rigid thinking patterns become so I’m determined to never let it get to that stage again. She comes from a very autistic family - we talk openly and often about it at home. Trying to get her to engage with anyone from outside is the problem. We have an appointment next week and I’m hoping we can get her to come- even if only to be weighed. She has POTS so they would like to check heart and blood pressure also but that might be a step too far. I’ve never heard her once talk about her weight/looks in a negative fashion- I just don’t really understand why this has happened. ED team are not interested in the whys either- all focus is on getting calories into her - I know they are right and it’s more important she just eats than anything else - it just feels like Groundhog Day!

@Spendthrifting I agree that getting calories into them is the most important thing, but unfortunately they can’t see that and think you only care about weight gain when all you really care about is that they are healthy again and engaging with life. The key seems to be to ensure that they have motivation to get better be that school, sports, holiday etc. The idea being that you expand their lives such that the eating disorder shrinks.

But you probably know this already, particularly if you’ve been navigating this illness for a while. I don’t know about services in Ireland but I do know that the NHS offerings here did not help my daughter and may have actually led to her demise had we not gone elsewhere. I know that sounds dramatic but their approach just did not work for her and she became more and more entrenched in her illness. It was terrifying to watch her decline. We’re not out of the woods yet though and progress is slow but things are better than they were

Hi, I've not read all the pages so apologies if this has already been covered.

I just wished to add an observation that the South London and Maudsley who are probably leading the way in ED, routinely screen ED patients for autism as the two so often coexist and when they do the required approach is very different.

Currently there are no guidelines for autistic people with eating disorders however there is the Peace Pathway:

Peace Pathway Peace Pathway Peace Pathway

I have always read along but never commented.

My beautiful girl lost her battle this week.

Hold your babies tight and fight for them everyday.

@LoudPlumDog so sorry for your loss. Just saw your other thread. RIP Ella 💐

I am so so sorry @LoudPlumDog. I know you have your own thread about Ella. Such a beautiful soul. Sending you big hugs.

@LoudPlumDog I am so sorry for your loss. Rest in peace, beautiful girl.

I am so sorry lovely. Your beautiful girl. Sending the biggest hug to you and your family xx

Apologies for quoting, that wasn't my intention, I wasn't sure how to add your name @LoudPlumDog (now worked it out) xx

Am so so sorry @LoudPlumDog rest in peace Ella x

I'm so sorry @LoudPlumDog, sending you and your family love.

I will light a candle for Ella tonight.

I'm so sorry to hear this, thinking of you. RIP Ella 💔

Your whole family remain in my thoughts.
Rest in Peace beautiful Ella

I’m so sorry, you and your family are in my thoughts. X

@LoudPlumDog, I am so sorry.

How's everyone doing?