Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Delighted for you and her @Girliefriendlikespuppies That is brilliant news. Thank you for sharing. Likewise @Lottsbiffandsmudge I love to read your stories of recovery

Yay @Girliefriendlikespuppies that's brilliant news. Its been a long 3 years i remember you being on the first thread I joined in 2020!!

@Girliefriendlikespuppies that's brilliant! Well done to DD and to you!

@Curlyhairedassasin do you have particular knowledge of experience of PANDAS/PANS? You're correct my DD's OCD like behaviour and heightened enxiety started very suddenly after a brief period of illness (GPs said virus, non-specific).

@GrannyRoberts

not at all. But I have a DD with a rare syndrome and in the early days was digging through the internet and came across it. I just remembered it was something that was triggered by viral illness and thought I mentioned it. That was all. Pandas is also mentioned by Eva Musby on her website. Sounds like something to maybe explore with the team?

@GrannyRoberts
https://anorexiafamily.com/pans-pandas-bge-inflammation-eating-disorder/

@Curlyhairedassasin thank you. A lot of that does ring true. I'll have a think about it.

In other news DD took her Sertraline today! They switched it from liquid to tablet form and that seems to have done the trick.

That's great granny. Babysteps.

DD hacked into my phone and went through all my messages to find info about her weight (we are doing blind weighing). She found what she was looking for. Had a terrible night but she has eaten most of the mealplan today. No remorse about going in detail through my phone. She is just a law onto herself. And so bloody miserable and moody most of the time. Yes she is eating (mostly) but the rest 😵. I just hope that it all will fall into place whilst her weight (hopefully) continues to recover.

I told the ED team I have no energy to push home cooked meals as DD is not cooperating at all. she just runs out. She is sticking to the plan and that mostly works for us as a family even though it is a rather sad way to eat for. But screw that for now. I can only do what I can do. I am really running out of steam. Doesn't help that it's school hols, DH is away for several weeks again and I am alone with it all and I am working fully from home on top.

Curly My dd found my folder with letters from camhs and my notes I'd written about appointments and my daily diary of what she had been eating/not eating etc. She was furious. It took ages to get back on track after that. Everything is hidden away under lock and key now! I worry she'll find this thread if she manages to get into my phone so I never leave it around, clear history daily and have stopped syncing to my pc.
Keep going with whatever your dd will eat if that's getting you through. You have enough to deal with on your own.

Granny that's brilliant and I really hope it helps.

Girlie so happy for you and your dd. We all need to know there's light at the end of this very long dark tunnel 👏

bagpuss, it's incredible to what length they go. I need to go through my files and make sure she cannot find those either now.

@Curlyhairedassasin so sorry to hear it's a bad day. My DD also found my notes, with a target weight written down. She got over it eventually, but it was tough so I sympathize. And I also understand about the lack of home cooked meals. If DD would eat, even if it meant calorie counting, I figured it was better than nothing and it would change as she did. It has. We're in a better place now. Still a way to go but so much better. Hang on in there.

Thanks for all the well wishes, it does feel like something has shifted slightly, there's still a long way to go until dd can eat freely but it reassures me that she can independently keep herself alive by eating enough.

Bagpuss I went through this with dd when CAMHs discharged her, I think I said to dd that she wasn't better but Camhs had done as much as they could and it was up to me to monitor her now. In some ways it was a relief not to have to go to weigh ins and talk to psychiatrists any more, it gave us both a chance to try and push forward a bit.

Curly I remember the mortal fear I had of dd reading my phone or opening a letter from Camhs, it's like working for mi5 ensuring everything is locked a way and they can't get to anything. That's good she kept eating though, I wouldn't make too much of a deal about it and keep going with getting the food in.

Dd has been given a college bursary for the next school year which includes £5 a day for lunch. I'm a bit nervous about this as dd isn't the best at choosing what she actually wants vs what's the least calories. Up until now I've been making her a packed lunch but I suppose this is another step towards encouraging independence 🙁

@Curlyhairedassasin just reading your message - we're on holiday and my DD also got hold of my phone and went through my messages, finding one to my SIL ages ago when I said she was doing well and over 90%.

Cue meltdown. Made sure my phone is harder to get into now but it's just made me realise I can't trust her in the slightest. Which is exhausting, the holiday isn't feeling very relaxing navigating the various triggers and balancing worrying she's doing too much with trying to make sure she has fun.

Oh god @BagpussSaggyOldClothCat I didn't even consider her finding this thread! Need to work out how to add face recognition to the app...

Hello everyone - I have some questions about binge eating post weight restoration, I hope this isn't too insensitive as I am fully aware that most of you would crawl over broken glass to see your child eat anything at all! 😥

In a nutshell, DD14 was 71% WFH in Sept last year, CAMHS said she didn't have ED (and did full 2 hour psych review so I suppose they must now right?) but weight loss caused by stress / anxiety. She reluctantly ate more but with no enjoyment (and went for fortnightly weigh ins which she detested) and was besieged with stomach issues which I've posted on before which still haven't gone away. By June she had made it to 93% WFH and CAMHS discharged her - hooray, job done right?

Nope.....around the time of her discharge, I noticed that she had been eating more and more and that suddenly, out of nowhere, her appetite had come back and she was enjoying her food. Obviously I was delighted! Then I noticed food going missing - whole jars of Nutella / peanut butter, boxes of Lindt balls, multipacks of cereal bars.... (stuff that before I couldn't get her to even nibble). I didn't say anything but then two weeks ago she confided in me that she's been binge eating, that it's something she's never done before, that it came out of nowhere and she now feels totally out of control. She is very depressed about it and now 'hates herself'.

I remained calm and explained that it's very common for the body to suddenly demand lots of food after a long period of restriction, that's it's just her system figuring out the best balance for her and that she's not to beat herself up or feel guilty about it. That in a couple of months, it will all sort itself out etc as long we stay calm and focus on eating regular meals and stress management etc.....

But I really have no idea if this is actually true!! Does anyone else have a similar experience??

BTW there is no way she will talk to a therapist or a counsellor - we haven't been able to get her to go throughout any of this. I am lucky though that she has confided her feelings in me I suppose!

@basilbrush - Hi there. That must be so tricky for you and your DD. It is fairly common for it to swing into binge eating in recovery. I would suggest getting in touch with a specialist ED dietitian. Priya Tew https://www.dietitianuk.co.uk/ is very good, as it Talia Cecchele https://www.taliacecchele.com/ - they both also have free resources on their website. It might also be worth contacting the Orri team as, even if you don't use their services, they will still be able to give you advice and support https://www.orri-uk.com/contact-us/

I hope this helps.

Basil** I think what you said was spot on tbh, it's really common to have bouts of extreme hunger post weight restoration, I think Tabitha Farrah talks about this as well.

I'd keep telling her to listen to her body and it will settle down.

The summer hols aren’t going great here. DD15 has lost weight so back down to 77% wfh. She was off school again in June but managed to put just enough back on to return to school a week before the end of term. Just in general, it feel so depressing to be nearly 1 year from diagnosis, 4 months off school in total and no further forwards!

A question re meds. DD has OCD which started pre ED but has got much worse. She has never been offered meds and initially we didn’t push for them. We now think she needs something, her anxiety is sky high and we’ve been asking since June but keep getting fobbed off. We don’t understand why….it’s always things like, we need to discuss with the team, we’ll try something else therapy wise etc. DD hardly engages in the meetings though and last week, as she was weighed first (done blind with no subsequent reference to it), she spent the whole meeting crying about being weighed! Did you have to push for meds and if so how?

The other thing is smells. If DD smells any unhealthy food, she has started holding her breathe, covering her mouth etc. She’s starting to avoid shopping centres etc and we can’t have take away at home. Before we could have and she would have something different. Now she goes hysterical at the smell of it. Has anyone else experienced this?

Thanks 😘

Blue does she have a fear of inhaling or breathing in calories? She sounds really unwell and I'd be really pissed off with the team, yy re meds. How much food is going in and is she loosing weight?

At this point I think I'd also be asking for a bed in an ED unit tbh.

@BlueDeer - it's not an unusual anorexic cognition. Not quite the same but, even though my DD knew it was nonsense, she still worried about gaining weight swimming in case her body absorbed the water.

Thanks both. Yes, def a fear of taking on calories. She is the same with sunscreen…thinking it is greasy so doesn’t want to put it on!!

She had gone back up to 80% WFH at beginning of July to go to school. So lost quite a bit over a month. She’s never been above 80% since last October. She remains fearful of so many foods, oil, cheese etc. The only dessert we can get her to eat is chocolate so she does at least have a small chocolate bar as evening snack. She’s on the meal plan but constantly trying to reduce it, skip the drink, swap out for the lowest calorie thing etc. The CAHMS team are nice but every week is the same and we get nowhere 🙁

@BlueDeer I think there are so many variations and complexities involved with eating disorders. My DD used to refuse any bath/soaps/beauty products that were fraganced or made from food products - like coconut butter, or almond shower gel - she was convinced that she would get calories from them. That was at one of her real low points. It's hard to rationalise with them when they are so poorly. Sounds tough for you at the moment

OK, so there is a big multi-agency meeting on Wednesday about giving DD meds, via NG tube or injection, without her consent. DH and I are invited. I don't like the idea of her being forced down and medicated against her will, but I am genuinely worried for her life at this point - she will get discharged into the community at 18, and, given her history of absconsion and refusal of fluids, we think she'll go downhill very quickly unless something can be done to turn her mindset around. We really don't have a choice here, do we?

Am reading the updates of everyone's weeks and cheering for the successes and so sad for the fellow stuck people. I don't have any faith but am tagging along to church w my friend who does because at this point a little God magic would be good.
I'm truly sorry @NanFlanders what a difficult position to be in, really feel for you.

@NanFlanders that is really tough. Ultimately though she deserves every chance at recovery.
I hope the meeting will help as keeping her safe in the community is a huge responsibility for you & DH once she is discharged at 18