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.

@f11 Just wanted to add, my DD (after years of serious illness - admitted to hospital 8 times for medical stabilisation - and misery) is a healthy weight, has a nice set of friends, a part-time job and is currently filling out her UCAS form. We are just back from 3 weeks in Vietnam - our first family holiday in 5 years. A year ago she was in an ED unit. I know it's hell, but your DD can recover too. Hang on in there!

Welcome F11. Sorry to hear you are going through this. From what you say it sounds as though your daughter is getting treatment pretty quickly so her chances of recovery are excellent. Although I am sorry to hear that she deteriorated so much while you were waiting. Seeing her being admitted will be hard but keep reminding yourself that she is in the right place and hopefully she will be able to step down to day treatment before too long. Hopefully, somebody with experience of a hospital admission will reply shortly but let me reassure you that over the last year I have read many success stories of young people who were admitted, sometimes in extreme circumstances, who are now doing well and getting back to their normal lives. Sending hope to you both

Ah, I just saw Nan posted. She and her DD are inspirational

DS has lost another kilogram, he’s back down to 73.6% wfh. He’s refusing to go to college. He won’t engage with any services. Refuses any medication. Not really sure where we go from here.

@Shanghai101 - Thanks, but right back atcha! And so are all the amazing women on thia thread @F11 Don't hesitate to ask or post anything. These people got me through the darkest times.

@WoodenTrain really sorry things are not improving. Has being sectioned ever discussed?

@WoodenTrain That sounds so worrying. In a way it's good he's not going to college as he should probably be on bed rest at that WFH. There is a link here about how to request an assessment (for sectioning under the Mental Health Act). https://www.mind.org.uk/information-support/legal-rights/nearest-relative/sectioning-and-guardianships/. It needs to be via his nearest relative - usually the older of the person's parents.

Hospital and sectioning were discussed back in April/May when he had dropped to 43.5kg. At that time he was eating around 500 calories a day. He then started following the meal plan to avoid hospital and went up to 48kg at which point he started restricting again. He’s now 45.5kg and eats around 1000-1200 calories a day. The ED team have very little input other than fortnightly observations (which are sometimes refused). They don’t appear to be very concerned.

@WoodenTrain
Reading through your posts, some of your ds’s traits sound a lot like my dd. She went through a time when she was younger and suffering from extreme anxiety of only wearing one top / skirt to school and one dress out of school. The not engaging with medical professionals is also very familiar. I think your ds did really well to allow the tests he did, my dd refused everything. You mentioned autism. My dd has no diagnosis but is being treated as if she has autism and PDA. I am just wondering if your ds has signs of PDA? https://neurodivergentinsights.com/blog/low-demand-parenting

I cannot fathom why your ds still hasn’t been diagnosed. It seems so obvious to me, a lay person that he has some form of ED, I’d think anorexia. Not diagnosing him means there is no access to treatment albeit idk if he would engage in the process. But perhaps you would get some assistance.

Where is your ds on the MEEDS checklist? And have you looked into Jenny Langley? She is amazing and such a kind woman. She does regular zoom workshops and monthly zooms with parents and carers.

I also understand your reticence for your ds to go to hospital. It is such a big thing for someone who is neurodivergent. However, at this stage, I can see how worried you are about your ds and there doesn’t seem to be much choice right now. I am so sad for him that he’s unable to engage in his college classes.

Welcome @F11 I hope it goes well tomorrow and your dd will make good progress in hospital.

Mummy, Wooden Train
Our DD is ND and struggles with flexibility of thinking. It makes recovery much slower than for a neurotypical person

@Mummyoflittledragon DS has a PDA profile for sure. No one has ever been able to get him to do a single thing he hasn’t wanted to do. Not even his supposed specialist school.

He missed all of Y11 so I was hoping college would be a chance for him to get Maths and English. He doesn’t see the relevance of any qualifications. His ‘college’ is actually an alternative education provider with only 4 students per class so I was optimistic it would be manageable for him. I think he is just too exhausted and anxious.

I think the lack of ED diagnosis is due to him not divulging his reasons for restricting his intake. I think they think it’s possibly due to low mood/anxiety, at our last meeting there was discussion around what came first the low mood or the restricting.

DS has on occasion made comments relating to body image (like he’d rather be dead than fat) but presumably not enough for a diagnosis of anything. I don’t know.

Yes @Shanghai101 I think it definitely makes recovery slower. I can’t even imagine being able to take control of DS meals and enforce 3 snacks and 3 meals and also sneak in extra calories. DS usually won’t even touch food he hasn’t plated himself even prior to the ED.

The most successful way of getting more food into DS is to leave some really tempting food out near him and act like I couldn’t care less whether he ate it or not.

I was quite pleased last night as I managed to get him to eat a bowl of homemade minestrone after he refused to come for dinner (because he already ate his daily meal at lunch) by just plonking the bowl down on the coffee table near where he was sat on the sofa.

I have created a new thread as this one seems to be filling up fast:

www.mumsnet.com/talk/eating_disorders/5172972-support-thread-13-for-parents-of-young-people-with-an-eating-disorder

@WoodenTrain

Acting nonchalant also works for dd. A sort of grey rock. The more I want her to eat, the less she will eat because of me backing her into a corner. A lot of the restriction is about control with dd and when she’s not good, she actually wants to upset me by not eating.

For a few months, she was eating the same food every day and I just slowly increased the quantity by an imperceptible amount and she slowly ate more. I get it’s harder in a way when your ds is eating lots of different foods. The thing, which really worked for dd was having friends, who took her out to eat and who came here and ate with dd. Putting lots of different food on the table and she will eventually eat it. She wouldn’t do it for me but she would for them, at least a lot of the time. Her friend is here this evening and dd ate some garlic bread (first time since January or February) for example even though she said she didn’t want any beforehand.

We did go through periods, where she’d sit in a restaurant with friends drinking Diet Coke/ pepsi Max and not ordering food, watching them eat. A family (with a brother and sister of similar ages to dd) took dd on holiday and they started the real refeeding process. It was a hell of a gamble but it worked out well. Dd restarted eating chocolate and biscuits whilst with them. Idk if you have any family or friends, who could help with this?

CAMHS were exactly the same with my dd, she wasn’t engaging and the anxiety for her definitely came first. In this case, my understanding is the protocol is to refer to therapy for anxiety, the reason being that it is considered no point treating the eating disorder if the anxiety is ignored. But that didn’t happen for dd and hasn’t happened for your ds. They kept on telling me they didn’t want to get it wrong. Yet not to diagnose is also a decision and expecting different results whilst changing nothing isn’t going to work. There are so many neurdivergent people / people, who present as neurodivergent out there that ED treatment should be FBT plus therapy for anxiety.

I can understand why your ds no longer wants to engage, nothing is happening. Is it possible to have a conversation with them without your ds in earshot about this? I get he would now have to give permission for them to speak to you.

My DS was an inpatient so please feel you can message me x

Not ED related but a casualty of the illness is my marriage. Nearly 20 years and it’s all imploded. I’m utterly utterly heartbroken and I’ve got nobody and I actually mean nobody that gives a shit about me

I’m so sorry @Cantfindthewordsddstruggling I know it’s not the same but I care about you and I bet lots of others on here do too. We fight so hard for our loved ones at great cost to ourselves. Nobody else really understands. But you are amongst people who get it here. X

@Cantfindthewordsddstruggling Oh sweetheart. I am so sorry. Can you take a break from each other for a week each (with the other staying with DD)? This horrible, horrible illness. DH and I fought so much when DD was ill and I once checked into a hotel for two days and spent the whole time sobbing. Also, I called the Samaritans quite a few times, and the Beat helpline. Keep posting here too - there are people who do understand even if we can't be there physically. Thinking of you

Just realised. This is the old thread. Link to the new one here: https://www.mumsnet.com/talk/eating_disorders/5334326-support-thread-14-for-parents-of-young-people-with-an-eating-disorder?page=4&reply=144830965