Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

@summertimesadness24 91.42%wfh

Thank you 🙏

@Cantfindthewordsddstruggling Unfortunately, I think SH is extremely common in sufferers. ED team seemed very sanguine about it in DD's case and didn't tell us, although they had known for age, which we weren't happy about. They said to check DD knew how to keep wounds clean! We didn't agree that it was harmless and kept razors/sharps under lock and key - you can get lockable meds boxes on Amazon. When DD tried to hurt herself by banging her head on the wall (at one point hospital had her on 2 to 1 to stop this when she was an inpatient) we put a pillow between her and wall. We also helped DD find other harmless ways to meet the need to 'hurt' herself, e.g. giving her ice to hold or a rubber band around her wrist to snap. The ice trick was really helpful actually and was also used in the ED Unit.

Also remove hair straighteners to stop burning.

@NanFlanders thanks. It’s all rather intense. We had our appt at the hospital today and I’m grateful that DH came too. Felt much less alone in the battle against the monster that is the ED.

The psychologist knew about the SH but didn’t tell us. How can we help protect and support our dc if we don’t have the information. It was just happenstance that I discovered it.Suppose we just need to assume risk for the foreseeable.

Not sure how I feel about the impending school holidays and having dd home 24/7. With the exception of the public holidays DH is working full time so the responsibility will fall with me. Hoping DH will supervise breakfast and morning snack tomorrow so I can rest.

I think for DS the SH started first, restricting his eating is an extension of that on top of a general lack of interest in food his whole life, which is probably due his autism.

@Cantfindthewordsddstruggling EDs are a form of SH as far as I'm concerned, just another method. The ice in hands worked so well for us, I'm pretty sure @nan gave us that one. I become DDs shadow and we endured many many meltdowns but the cutting has been gone for about 9 months I think. I found the ED unit v blase about it. My younger daughter has just lost an old school friend from SH that went too far so I think they should give it more attention and gravitas 😥

@ReineDeSaba I will chat to dd about self harm alternatives. It’s difficult to know just how much supervision is required. All meals and snacks are supervised but she is sleeping in her own room at night and doing her school work in her room. Been over a fortnight since last act of self harm but only found out about it last week and discussed the self harm with hospital today .

Good to ask your DD @Cantfindthewordsddstruggling my DD hated the rubber band stuff. The SH came back because of the stress of meal plan and the 24 hour policing was after midnight exercise and lots of food stashing but as well as cementing new routines it obviously interfered w her chances to SH. We had realised at this point DD would say anything to hide her self damaging behaviour and could no longer be trusted at all😥

@ReineDeSaba We’ve managed to stop the excessive exercise. She wasn't permitted to exercise at all until she was close to weight restored and her obs were stable.
She is managing her approved 3x 30 min walk or run sessions a week. She only exercised twice last week and she had planned to do a run yesterday but decided she was too tired so, so I think we have found a balance. She is allowed to participate in PE lessons at school but no fitness testing.Afterschool or weekend sport is not permitted and something that will need to wait until further into her journey of recovery.

My DD self harmed back in lockdown and I feel like there was an instinct on my part that that it could(would?) lead to something more serious. She has continued to do it in times of stress and massively downplays it. She said she now does it maybe once a month and still doesn't think it's a big deal, and is at least honest (to a point) about it. I do feel like SH and EDs are strongly linked.

While I'm on if it's OK I'll post a quick update. DD seems to have turned a corner. She's eating regularly, under our supervision. Has tried numerous new foods and is tackling the occasional fear foods. I am obviously very happy about this but she seems to be doing it very fast, and I am a bit worried about a relapse. (Although her weight gain is slow.)

Mood wise she is reeeeeeeeally struggling with depression. She was on fluoxetine but said it was making her nauseous so psych consultant put her on Olanzapine and that isn't helping at all with the feelings of sadness. It now turns out she was lying about fluoxetine and nausea because she felt she could use that as an excuse. Again, her honesty has made her own up to that. So we're reviewing meds in a week or so.

She is frequently overwhelmed by guilt, whether it's about the food she's eaten or cancelled plans or arguments in the house (she has an older DS and he's pretty argumentative to say the least).

I am reading your posts and feel bad that I can't always reply, I read them at work and start a reply and then have to do work and by the time I can go back to my post the thread has moved on. But I'm sending love and thanks and to you all.

@Cantfindthewordsddstruggling that sounds like a v positive step around not doing a run. DD now afraid of anything that looks likeformal exercise as feels she will get sucked in again but will still walk/go on errands when clearly exhausted

@SicilianOrange great that your DD turning a corner around foods. My DDs mood goes up and down a lot but I figure she's 17 and full of hormones and A level stress

I spoke to ED team earlier as CAMHS recommended we re-refer ourselves, apparently she’s back down at 79% wfh. They’re suggesting an ARFID pathway - has anyone got experience? Do we still aim for 3+3?

Hi

Sorry for jumping in, I read this thread occasionally but never had a reason to post before as my daughter has ARFID and all the children here seem to have anorexia

@Glitterfarti no, the treatment for ARFID is not the same as anorexia and trying to treat it with 3+3 can cause a lot more damage. If you live in the right area then you can self refer to the Maudsely who are world leaders in ARFID and have been fantastic with my DD

I would refer yourself if you can. We are still waiting for a diagnosis but they think ds may have arfid/anxiety and we are doing 3+3 as the main priority was to get his weight back up to normal before they can try to figure out what is going on and how we ended up here. We are sticking to safe foods, foods he ate regularly and well before he was unwell so there is hardly any variety and we still have 4 fortinis a day which will hopefully start to go down. We've only just gone back to sports and they're waiting to see what impact this has on his weight before we take the next steps.

Yes, my DDs ARFID is also anxiety driven - the anxiety was causing severe stomach pains and loss of appetite

we were told not to try and force her to eat as that would only make her anxiety worse and be counterproductive. Instead we got help with the anxiety from a psychotherapist and left her safe foods out for her to help herself whenever she fancies with no pressure at all (including in the car or after bedtime) - this was mainly in the form of biscuits. Thankfully she has started snacking on these foods very frequently and has started to regain weight

My son has been diagnosed with ARFID and the inpatient unit he's currently in have also done 3 + 3 to help with weight gain.
He has a huge aversion to dairy but in the past two weeks has had ice cream and yogurts :) real fear food for him.
Happy to help if I can but def no expert here! X

Thank you all, she eats a small amount of a wide range of foods so no fear foods, just doesn’t want food in general. Lots of tears again and she feels cold/clammy but internal temp ok. Heart rate a bit low (60-65). We are about an hour outside London so will swot up about the Maudsley team.

Has anyone else's DC faked their weight? (making it seem higher). I've been asked about this but I'm unsure whether to ask DD because she's v good at lying/covering her AN up... I don't understand how she would be doing this anyway? Should I be looking for any clues?

@lyriccat not faking it but manipulating. Water loading (drinking a lot of water before weight checks) is popular and we are having it regularly at the moment to the point we don't really know DDs weight. She also had a one point where DD had put stones in her pocket.

Even not emptying their bladder or bowels before a weigh in can impact their weight. DD’s weight was 0.7kg lower after we sent her to the bathroom.

Water loading is a big one. Fortunately it can't carry on past 4 weeks or so, as there is a limit to how much they can consume. Also wearing two pairs of jeans - watch out for that one. And stones in the pockets.

We have dd wear shorts or leggings and t shirt to her appt for weigh ins. She wears a hoodie/jacket until she steps on the scales if she needs to for warmth.

@Cantfindthewordsddstruggling Yes. We did try, but ours just refused. In the ED Unit, they all had to change into paper gowns for weighing. I think they should do that in outpatients really.