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

967 replies

Curlyhairedassasin · 24/09/2024 20:22

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

OP posts:
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Shanghai101 · 01/10/2024 14:36

I mean the friends’ parents, of course

Curlyhairedassasin · 01/10/2024 14:39

Shanghai101 · 01/10/2024 14:35

Curly, the first bit of your post is kinda funny but the next part is too sad. Have you asked any of your Dd’s friends if they can help. I hate to ask for help but in the circumstances I would and I know if anybody asked me I would be only too happy to help if I could. In fact, if you live anywhere near me, I would gladly collect your daughter from school.

DD1 is at a special school further away. all her friends have complex needs and non local and DD2 is in year 9. All her friends are independent. Parents just dont do the school run anymore and those I know all work full time. There just isn't anyone.

OP posts:
greydoor · 01/10/2024 20:02

@JoyousCyanCat - how did it go today?

Cantfindthewordsddstruggling · 02/10/2024 10:42

I didn’t know where to turn. Just come from dd’s psychologist appt and been informed that she tried to commit suicide at the weekend. DD is home with me at the moment. The psychologist is communicating with CAMHS. I felt like I was going to be violently sick when I was told and the feeling has only slightly subsided. It happened at home, so it’s a worry that we can’t keep her safe. The high risk items have been removed.

Mummyoflittledragon · 02/10/2024 13:51

Cantfindthewordsddstruggling · 02/10/2024 10:42

I didn’t know where to turn. Just come from dd’s psychologist appt and been informed that she tried to commit suicide at the weekend. DD is home with me at the moment. The psychologist is communicating with CAMHS. I felt like I was going to be violently sick when I was told and the feeling has only slightly subsided. It happened at home, so it’s a worry that we can’t keep her safe. The high risk items have been removed.

Oh gosh. I am so sorry @Cantfindthewordsddstruggling Thank goodness your dd communicates with the psychologist. Is your dd at school now and are you ok? I mean have you calmed down a bit. Please try to look after yourself and eat something. Even a piece of toast with butter. If you can’t eat, herbal tea sweetened is good for the shock.

I know your husband is a bit useless. But is there anyone irl you can turn to now. And don’t forget the Samaritans are there for you day and night. www.samaritans.org/how-we-can-help/contact-samaritan/talk-us-phone/ Then there’s BEATS https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines/ phone lines are open 3-8 weeknights. Mind has a list of useful contacts. https://www.mind.org.uk/information-support/helping-someone-else/supporting-someone-who-feels-suicidal/useful-contacts/

You know where we are if you need us / a chat or a PM. Big hugs and big hugs to your lovely girl. Flowers

Helplines - Beat

Beat provides Helplines offering support and information about eating disorders no matter where you are in your journey.

https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines

Mummyoflittledragon · 02/10/2024 13:57

Welcome @JoyousCyanCat or perhaps that isn’t quite the right word. I hope you’re doing ok today.

Thanks for the new thread @Curlyhairedassasin. I just don’t understand why things take so long. I hope your dd gets a PRU place sorted soon. I understand how infuriating things can be with my dealings with CAMHS.

Curlyhairedassasin · 02/10/2024 14:01

@Cantfindthewordsddstruggling That must have been so upsetting. But good that your DD is open with the team. DD has been suicidal and been on suicide watch to the point of sleeping in the same bed. It's been exhausting. I hope the team have a plan forward as to how to support DD and you. And make sure you look after yourself.

@JoyousCyanCat hope your appointment went well and wasn't too overwhelming.

OP posts:
greydoor · 02/10/2024 14:15

@Cantfindthewordsddstruggling really sorry to hear this, that must have been a horrible thing to be faced with hearing. Glad she was able to tell someone, hope they are getting a plan in place or thinking about how to go forward. I know it's been a very long road, I am holding a bit of hope that this can be a turning point for your lovely dd.

And echoing a sweet tea for some hydration and glucose - I find it comforting.

Holding you in mind xxx

Shanghai101 · 02/10/2024 14:17

Cantfindthewordsddstruggling · 02/10/2024 10:42

I didn’t know where to turn. Just come from dd’s psychologist appt and been informed that she tried to commit suicide at the weekend. DD is home with me at the moment. The psychologist is communicating with CAMHS. I felt like I was going to be violently sick when I was told and the feeling has only slightly subsided. It happened at home, so it’s a worry that we can’t keep her safe. The high risk items have been removed.

I’m so sorry. I was also going to suggest that you try to talk to someone from BEAT or Jenny Langley at Charlie Weller trust or even make an appt for yourself with a private psychiatrist specialising in EDs, if that is at all possible, for advice on where to go from here - although hopefully you will hear back from CAMHS urgently.
On a positive note, it is good that she told her psychologist. You probably know this already but keep telling her how brave she was to tell them. And how you and they have her and will hold her emotions. If she doesn’t already journal, then please encourage her to write down what she is thinking / feeling and even give it to the psychologist at the next meeting. Sometimes it can be helpful to put it down on paper and hand it over to somebody else and hopefully that will enable her to not dwell on it. Other strategies to help with those big feelings is to get her hold ice to help her ground herself.
I’m so sorry I can’t offer anything more practical but hopefully somebody will be able to come on here and give you better advice. Sending love to both of you.

Cantfindthewordsddstruggling · 02/10/2024 14:38

Thanks everyone. I can’t quite find the words to thank you all properly, but all the posts have made me feel much less alone.

JoyousCyanCat · 02/10/2024 19:49

@Cantfindthewordsddstruggling, this sounds awful. As others have said, please take hope from the fact she was able to tell someone.

Our feedback appointment was ok. Family Based Treatment starts next week. We have our first session on Monday and see the dietitian on Tuesday, who is going to assess DD and provide a meal plan.

We’ve both told our employers that we will need flexibility. Also, thank god, my mother has offered to help and the clinic is encouraging this.

School has offered a SEMH Teaching Assistant to supervise eating at lunchtime. Apparently she’s done it before for other kids, but school has suggested a meeting between her, the SENCO and the nurse/therapist doing the FBT, so she TA knows exactly what she’s doing.

Obviously, we’re not going to be able to get her in to school every day, but on days she wants to be there and is cooperating with eating, I think the routine, distraction and friends will do her good. I guess we’ll need to wait and see though.

I’m feeling very impatient, particularly when I watch how few calories are going in at the moment.

greydoor · 02/10/2024 20:43

@JoyousCyanCat glad it went well. Sounds like you've got some good support around you, and it's a good idea to let your work know. If there isn't a reason to wait to increase calories then I'd probably be starting to work on it myself before next week - I am impatient too! You could always introduce the structure - 3 meals and 3 snacks - even if you keep content small for now. I got advice from this thread, and read other things online and we started 3+3 the day we went to the GP.

We were never given a meal plan as we waited for 7 months to be picked up but I've heard other parents talking about how they can sometimes be a bit on the light side. I just went hell for leather in adding in hidden fat and calories (which I also don't think ed professionals are in favour of either), and we managed to add between half and one kg per week mostly, with a few blips. It took about 7 months to get back to 100% wfh.

How was your dd during / after the session? I remember feeling completely wiped out at the start, so much to get your head around for everyone.

Girliefriendlikespuppies · 02/10/2024 22:30

@JoyousCyanCat you don't need to wait, from tomorrow tell your dd that from now on you and her dad will be making all the food decisions for her.

She has to eat 3 meals and 3 snacks.

She is not allowed any say over what those 3 meals or 3 snacks are.

She is not allowed in the kitchen.

Sit down with your dh and come up with a meal plan based on foods you know your dd likes.

Make sure you buy all the full fat food you can, so full fat milk, butter, double cream etc - these fats are your dds medicine and what she needs to recover.

FBT is not something you go to - that's family therapy which is different - FBT is doing the above day in day out.

It's hell because your dd will kick off, she will scream, she will hate you, she may be violent, she may threaten to kill herself.

All of which is sadly normal but you keep plating the food up and putting it in front of her.

She has to eat it.

What helps?

Well distraction helps, use whatever distractions you can once they start eating, Tv, games, crafts, talking nonsense, anything to get their minds off eating.

Staying calm but resolute that they will eat. You have a lot more power than you realise, your dd wants to eat but needs your permission to do so.

Leverage, when and then worked for my dd so 'when you've eaten that then we can play a game/go to a friends house' etc

JoyousCyanCat · 02/10/2024 23:16

Thank you.

Partner is 100% on board, which I know makes us very lucky. She’s going to visit her elderly mother at the weekend to explain the situation, so I’ll be flying solo with two kids. As impatient as I am, I don’t think I can start without her by my side.

What happens when breakfast runs into school time? Do we just keep her back from school, at the breakfast table?

What if one meal isn’t finished before the next is due to start?

What happens when dinner gets to midnight and she’s falling asleep, crying at the table? This is where we’ve really crumbled in the past.

It’s these practicalities that I don’t understand. I can insist she stays at the table until she’s eaten, and even make her eat a bit, but she can drag that out seemingly infinitely. This is how we’ve got into the situation where she’s lost the weight.

JoyousCyanCat · 02/10/2024 23:25

@greydoor we were all exhausted. None of us went back to work/school after the assessment or the feedback. But then I haven’t managed to sleep properly either.

DD is ok. She knows what is coming (in practical terms) and is braced for it. We’ve discussed the fact that she is going to be very angry and upset with us, but that we’ll be doing everything because we love her.

What support to people recommend getting as parents? We’ve told our friends, but should we look outside our usual circles? I’m wondering about peer support or counselling. I can see that this is going to hinge on how resilient we can be and that’s not always my strong point. Will the FBT person give us guidance on that?

greydoor · 02/10/2024 23:53

In terms of the practicalities of how to get them to eat, I found the Eva musby chapter and YouTube video specifically on this really useful - it's like a walkthrough of what to say in response to the challenges. We used to say things like "take the next mouthful love", "keep eating sweetheart" etc. in the early days she was distraught at the 'amount' of food, and we would say often things like "you can trust us, we know what you need". I would refuse to negotiate or even discuss food, weight etc. there were frequent conversations where she would just go round and round in a "but whyyyyyyyyy" circle, it was exhausting and in the end best to not engage with it beyond the first couple of times of explaining something.

Our meals did sometimes go on for a long time, and we just sort of let it, but always encouraging her to keep going. Eventually they got shorter. Our dd was really furious with us and wanted to be away from us in her own space, so that was a motivator for her, as she realised that the faster she ate the faster she could be rid of us. You can use any motivator you can think of. My dd was allowed one walk a day then and we used that as a carrot sometimes.

We watched tv during meals, and we had these in the living room on the sofa rather than at the table, so she could feel sort of relaxed and distracted. I was clear from the start that she would be eating what we gave her, no matter how long we had to sit and wait for it, and we would be lining up any additional meals behind that one if it took us into the next meal or snack time. I really did focus on giving her small portions, so fewer mouthfuls, but as high calories as possible. I found the highest calorie snack bars, sliced bread, icecream, yogurt etc and that was all that was in the house. This is probably not what the dietician will advise, but I read on another forum a mum who said 'if you have to drive through hell, drive fast' and that really stuck with me. Weight gain is really the main element to the first part of recovery, so it seemed most sensible to just get on with that as fast as possible, although it was horrible at the time.

Good to think about support for you now too. We don't have family close by, and I wish we did. We told friends too, and they were sympathetic, but I realised not many people really got what we were going through - I don't blame them, I would be the same. There were some days I felt a strong urge to get in my car and just keep driving as far away as I could. I wish there was someone else who could have taken over for a mealtime occasionally. Sounds like maybe your mum can help with this kind of thing.

It has taken its toll on us as a family and me in particular - I have really driven what we have done and fought to keep us on track. My dh would have given in many times but I wouldn't allow it. For example he would often say things like "she's eaten most of it - why don't we just let her stop eating now?" But I knew from this group that the voice in her head would have seen that as a victory and been strengthened by it, so I just couldn't let those kinds of things happen.

I have taken a sabbatical from work for a few months, I'm really worn down by it all and trying to work while supporting her to recover. I'm very lucky to be able to do that, not many people can. It's hard juggle, so if you can find support then take it. We did a BEAT course called developing dolphins which was a 6 week online course. We met other families there, and learned a lot. Your FBT practitioner will hopefully guide you with this.

Sounds like you're in a good place and ready for what's next. Everyone here is always ready to help too x

greydoor · 03/10/2024 08:23

@Cantfindthewordsddstruggling how did the rest of the day go yesterday? Hope you're all ok x

Girliefriendlikespuppies · 03/10/2024 08:34

@JoyousCyanCat honestly I wouldn't wait another day, the longer it goes on the harder and more prolonged the recovery is.

I would take your Dd out of school to get 3 plus 3 established. At 85% she's borderline bed/sofa rest territory anyway and I wouldn't send her back until she is gaining weight and the food is going in.

You can either wait it out at the table or set a timer for say an hour. If it's not eaten after an hour you can plate it up and put your dd in the car and drive to a&e.

The hope is en route she'll change her mind and start eating but if not see it through, explain in a&e your dd has anorexia and you are not able to get her to eat. They need to do all the checks - bloods, ECG, bp and pulse etc.

It might be that your dd does need admission to get FBT established so don't ever worry about going to a&e, anorexia has a similar mortality rates to childhood leukaemia so should be taken very seriously by medical staff.

NanFlanders · 03/10/2024 09:05

@JoyousCyanCat I would also recommend the Beat website. They have lots of courses, including virtual meetings, for free about all sorts of things, like encouraging your DD to eat, ED in combination with ASD, dealing with Christmas, etc. They also have a helpline.

JoyousCyanCat · 03/10/2024 09:42

Thank you all.

Are there rules of thumb about the %WFH thresholds? Like 80% = bedrest, 70% = hospital admission etc.

Girliefriendlikespuppies · 03/10/2024 10:50

JoyousCyanCat · 03/10/2024 09:42

Thank you all.

Are there rules of thumb about the %WFH thresholds? Like 80% = bedrest, 70% = hospital admission etc.

It's pretty vague as a lot will depend on where your dd sat naturally, so for example my dd was always naturally around 110% weight for height so at 90% was very ill (cold, blue lips, low heart rate, periods stopped etc). She narrowly missed admission.

Roughly though I'd say 80-85% wfh is only school if eating/gaining weight but no walking/PE/exercise.

Less than 80% wfh no school and on bed/sofa rest.

But as I said it can vary a lot depending on what your dds normal wfh is and how much food is actually going in. Physically food restriction can suddenly cause cardiac/renal issues in children who will compensate for a while (so look okay) until they suddenly don't cope.

greydoor · 03/10/2024 11:08

My dd was just under 80 I think and we were told bed rest would be sensible, but if she did go to school there was no walking there and back, no PE etc. We kept her off for about 6 weeks because she was really tired, cold, her heart rate was slow ish, and she had no ability to engage in anything. She went back mornings only for a few months, and did all eating at home.

It all felt a bit surreal as prior to us realising what was going on she was 'fine', but as soon as we realised and went to the GP she seemed to deteriorate really quickly, so even though just prior she was seemingly managing school fine, she wouldn't have coped with it once she was diagnosed. I've heard lots of people talking about how once you start treating the ed it 'comes out fighting', and this definitely seemed to be the case for my dd - the ed seemed to overwhelm everything once we started working on it.

Cantfindthewordsddstruggling · 03/10/2024 11:43

greydoor · 03/10/2024 08:23

@Cantfindthewordsddstruggling how did the rest of the day go yesterday? Hope you're all ok x

Rest of day went ok. Dd pretending everything is ok and she doesn’t know what the fuss is about and why we are upset. I’m still feeling really fragile.just managed to eat my first proper meal since I found out. Just seems to be one fire after another. Not sure how best to protect her moving forward. Home is meant to be a safe space.

NanFlanders · 03/10/2024 12:50

@Cantfindthewordsddstruggling Just read your update from yesterday. I am so, so sorry. What a shock for you. Are you getting any kind of counselling yourself?

Mummyoflittledragon · 03/10/2024 13:46

@Cantfindthewordsddstruggling
It is really good you managed to eat. Putting your oxygen mask on first is so important and I have to remind myself of this too. Rest, eating, a little time for self care. This is the thing, that’s really hard with some people with ED, they’re so removed from everything emotionally that they don’t understand what the fuss is all about. Dd is just the same. I know you have much more on your plate than just the eating right now with your dd. I also think that therapy for you would be really beneficial.

@JoyousCyanCat
My dd was really ill at 85% wfh and on bed rest. When the ED started she was well over 100% and on the 88th centile. I haven’t weighed her for a few weeks - she will not weigh in - but 5/6 weeks ago she was on the 39th centile. I can’t remember what I worked that out to be. Something like the 88/89%. She’s eating loads and active again, slowly putting on weight.