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

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

@Curlyhairedassasin - I wanted to say what a dreadful, stressful situation. My son does not have an ED but has autism and extremely high anxiety. Recently the high anxiety, obsessional thoughts ..
pushed him into a psychotic episode. I am not saying I think your daughter is psychotic but hearing and seeing things may be an indicator of something new. Do you have a social worker? - if not I would ask for an assessment. Not a magic answer but we have found the support from social services slow but helpful.

Girliefriendlikespuppies. I was toldvthat as she was 16 now 17 she should be under adult services. I took her to A& E around a week ago and bloods were taken, all good. ECG done and all good. She is just struggling and has no energy. She gets angry alot and I was told its linked to autism and its the eating disorder taking over. It is just hard.

@Curlyhairedassasin might you be able to use school refusal to get the ASD assessment expedited. Isn’t there something about alternative provision if a child misses 15 days of school on medical grounds. This might spur the authorities on to help you.

I don't know. I am making enquiries ATM. my plan A is for things to calm down over the summer. I can bridge the next two weeks until break up but I am trying to find out what will happen if she cannot go in. ASD assessment won't be expedited. There are so many families here who are waiting. Some in much bigger mess. Locally in my LA it is particularly bad and worse than many others. Alternatively, I can look into a private assessment if I think we need it DD1 has severe ASD so at home, I am well equipped with the spectrum stuff but it's such a gate opener for support at schools and educationally esp as she is high functioning and doesn't have learning delays. I think we may need it for that.

We had one but they closed the file due to lack of safeguarding concerns. We are now under short breaks team and have been given a few hours per month for my oldest with severe ASD/LD. Took years and years. I don't have the energy to.start this again for DD with AN. It's not worth it. takes too long and gone gains are marginal .just glad we have now a few hours for my eldest so I can spend more 1:1 with D2 (the one with AN).

Can I ask what your DS's psychotic episode looked like and what was done about it? Just wondering if it is similar to what we are going through... It's easy to find other people who have children with ASD or an ED but it seems nobody here is having the psychotic elements we are having with seeming and hearing things.

@Curlyhairedassasin He had become very stressed about a herbal medication he had taken and thought he had taken too much...that he would die and started to talk in circles. He was already stressed about coming to the end of school and what he felt was an uncertain future - this seemed to be the tipping point. We saw overthinking, obsessional thoughts and then over a couple of days thinking people in the TV were talking to him. He became very suspicious of people, didn't eat, wouldn't take medication. He didn't sleep. He became desperate and tried to commit suicide. Police, ambulance, sedation in hospital ..it was traumatic - no support, no ongoing support. I just thought that hearing and seeing things could be something else not to do with her medication or weight loss but more to do with her anxiety.

oh, that sounds scary. Very different to us. She knows that the things she hears and sees are not real but finds it very stressful. The team say her hearing/seeing is the result of severe anxiety. But it's doesn't really help as as we cannot get a handle in the anxiety. There just isn't much help. so we go round in circles. I just hope it all eases off once the school breaks up and of the month.

I hope your DS is in a better place now! It's just such a scary and stressful time esp when the right support just isn't there.

@Curlyhairedassasin things that helped us with severe anxiety were taking all demands off (not easy when tackling an ED) and allowing her to stay home from school when she was too tired, overwhelmed or feeling like she couldn’t cope because she hadn’t revised, friends issue, whatever. Sometimes just telling her she could stay home was enough and then the following morning she would go in of her own accord. But other days she was just too mentally exhausted to go to school. We have had to learn a lot about autism and masking. I appreciate that your older DD has autism so you probably know all this but a lot of what you said about your DD and not having friends at school resonated with me and I wanted to share what helped us.

@Shanghai101 Thank you. That is what I am doing at the moment. I don't force her to go in. She hasn't been in almost a week. Taking demands off has certainly helped and at home she appears to be better (not ok but better). Just counting down now till the end of the term. She said she would like to try some mornings later in the week but will take it from her.

Can the friendship problem contribute so much to school anxiety? It's something I am trying to understand. A recent breakdown in a friendship seems to coincide with the school refusal and I wonder if it's potentially all related. DD doesn't talk much so won't tell me.

@Curlyhairedassasin i think friendship breakdown was the last straw for our DD. Her self esteem was already low and finding herself on the outskirts of her friend group with no one special to do things with was the catalyst for severe anxiety and depression. Restricting food became a coping mechanism to numb emotions. It happened over years and it is taking years to come back from. We had to understand that our DD is super sensitive and things that I thought she should be able to shrug off were unmanageable for her. Tik tok etc exacerbated everything.
One of the most important things that I have learned is to validate her feelings e.g. when she tells me she looks fat, instead of telling her she isn’t etc I say that must be very hard for you. Usually that and a hug is all she needs and then we try to move on to something else.
In the past when one of my kids would tell me they didn’t get a part in a school play/team etc I would tell them not to worry, it didn’t matter etc when what I should have been saying was “that must be very hard for you” and allowing them to feel the sadness and work through it.

The friend thing is really hard though and all young people seem to have their own problems so aren’t really able to empathise.

If she is anything like my DD, Curly, then she is being eaten up inside by low self esteem.
We got a private ASD and ADD diagnosis and started DBT (CBT didn’t work). But I think the thing that has made the biggest difference is how we as a family communicate now and try to understand each other better. And I listen to them now. Previously, I thought that I, as the adult, knew better.

Shanghai that is interesting. I am the same in telling "it doesn't matter" when DD is upset.
I completely missed DD ED for such a long time, I think she was hiding it from me as I, in her eyes, didn't take it seriously. Defintitely something to think about.

Slowly, I’ve been told that I need to let her sit with the discomfort.
To think that I thought that parenting came naturally to me!!!!

How do you manage purging? I’ve suspected for a while but now noticing what I think are vomit splashes in the loo. Sadly the rest of the family don’t seem to know how to use a loo brush so I’m not 100% sure but the calories she does eat aren’t sticking. DD flatly denies it, do I just tell her I know and she doesn’t have to hide it, or ignore? We were doing a toilet ban for half an hour after meals but tbh this has gone on for so long we’ve got less strict recently.

I think the best (and only) way is to enforce the toilet ban after eating and supervising strictly.

Glitterfarty, so in 2020 DD was purging, only found out after maybe 6 months.
So not the best person to ask. Anyway, reason I found out first time, was after routine dental checkup, when she needed at least ten fillings (with only about 6 months after previous check up).
Still don't know if or when she purges, but dentist has prescribed some high fluoride toothpaste.

With purging I think you have to be really strict with making them go to the loo before meals and snacks and then no bathroom breaks for at least an hour afterwards.

You can also hover outside the bathroom and if needed insist they leave the door open a bit so you can hear what's going on (God this illness is crazy 🤪)

Yep, toilet before meals. Can’t also have them sing when in the toilet which means they don’t need to leave the toilet door ajar

Just joining as recommended from a thread I made. Just starting this journey I think

Hi @F11
If you post the issues with your dd, you’ll get some great advice. Lots of posters further along on their journey on here than me.

Sorry you are here @F11 - but welcome. This thread was a great support to me at the worst time in my life. We are in a much better place now - you will get through this too. Best wishes

Hi @F11, Sorry you’re here but you will find much solidarity and a sense of reason when it feels like you’re losing your mind.

Hi! Not been on in a while but have been reading. @Curlyhairedassasin am so sorry for all that you're going through - you are a super hero for holding everyone together to the best of your abilities.
Do you know who your local authority/health partners have commissioned around suicide support - I know where I am the agency/charity commissioned accept direct referrals. I don't mind having a dig around for you if you want to PM your LA area - if its one fewer job for you to do, I am pretty nifty with google.

We had another appt for assessment with ED team today, so back on the carousel, no doubt to get flung off abruptly in due course. Have to wait until the end of the week to hear the outcome. Anyone got any tips for preserving your own MH while wading through treacle to help your child?

@Glitterfarti Does CAHMS in your area have someone, who can talk to you? There is a wonderful woman, who calls me for an hour about every 3 weeks. Her dd used to have a ED. She helps me to put things into perspective. She lifts my mood. I just talk about things to her. We talk about coping strategies, such as putting on armour to go into ‘battle’ and to ensure that I also self care.

It’s ok to sometimes put yourself first. The woman reiterates it’s a marathon, not a sprint. Then at the end of the call, she asks me if there’s anything I can take away from the call or that I can do.

I spoke to her today. I spoke about my guilt of monitoring dd when she’s 16 and I really should be backing away. I spoke of the stress rising when I talk about certain subjects and that in future I should back away, remove myself from the situation until I feel calmer. This is what you did in a way in March when you went for a walk in the rain.

As for stuff I do myself, I talk to people about my feelings. I text. I have a new found love of rap and I listen to that when I’m in the car and some of the time when out with the dogs. Lots of swearing. Right up my street right now. I also have a therapist for myself.

If you want to talk to someone, BEATS are really good. Or there is always the Samaritans albeit I appreciate they can’t really advise. But they can listen. The CAHMS lady also advised me to get the Maudsley technique book (skills based caring for a loved one with an eating disorder) and consider the zoom workshops by Jenny Langley. Or please write things on here. I’m not terribly experienced with ED and maybe not able to give the best advice. But there are some wonderfully supportive women on this thread, who will read and do care.

I understand it’s really hard to stay calm, centred and controlled around your child when they’re so out of control. You are a great mum. You’re not giving up and you’ve been to war.

Hi, can I join here? My dd has been referred to FEDS as an urgent referral. We are waiting to hear from them so feeling a bit lost at the moment. She has a meal plan after a visit to hospital yesterday with low heart rate,she is refusing to follow it. I'm feeling so broken.