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.

I would also make sure that they consider the toll that the anorexic rage is taking on your own MH not to mention that of your special needs daughter. The impact of this illness on all of you is devastating. You may need to spell this out to them

Thanks you @lexilou985 I guess I need to learn to trust DD again. And hopefully she can learn to trust me enough to confide in when she is struggling

@Curlyhairedassasin
Some of the girls in the clinic lived over an hour away, and some had been there 12 months so their parents could only visit at weekends due to work commitments. Some visited every day. It’s really up to you. There were no expectations.
I don’t think you can demand that she is admitted, as there is so much demand, that the most in need will get the bed. As one patient left the clinic, another patient was admitted. If you just walked out of the ED clinic, and your DD didn’t meet the criteria for a bed, then she could possibly be handed to children’s services.
My advice would be to work with the team, not against them. Be honest with how your mental health has deteriorated, how you are fearing the future, your safety etc. if you can show that you and your family are at crisis point, you may go up the priority list.
It is a desperately sad situation and I really hope your DD gets the treatment she needs. Be kind to yourself and take any help that is offered.

@Curlyhairedassasin even if she gains a little get the clinic to look back over the years at her gains (if I'm right maybe wrong!) it's always been a little and never enough to get your dd out of the hold an or anxiety has on her. They need to support you through this, I'm so sorry they cancelled the meal support. It was vital in our early days. Your dd's reaction is typical Ed behaviour I remember our team saying fight or flight, she really is struggling not to mention you and your other daughter. An admission could hopefully really turn this around for her and I wouldn't be afraid to lay everything down for them. They have a team to support there, at home it's just you and you are already spinning multiple plates.
Lovely to hear another success story. It's about a year to the day that I realised where we were heading and our treatment didn't properly start until October/early November. We are in a much better place and hoping to keep getting better, this year has truly been the lowest of the low.

Wish I could just pick myself up but feel as if the stuffing has been knocked out of me DD is eating more freely now but we had a period of restricting a few weeks ago. Fortunately we managed to nip it in the bud quickly.
dd’s psychologist has suggested some possible neurodivergence but she’s perplexed as traits only seem to have surfaced at age 13.
Has anyone else only noticed traits at such a late stage? DD definitely suffers from anxiety but possible ASD or ADD/ADHD has taken me by surprise. Light sensitivity, noise sensitivity, overwhelm, struggling with sleep and emotional regulation. Would be incredibly grateful for advice and words of wisdom. Thanks

Hi @Cantfindthewordsddstruggling

Sorry to hear you feel that way.

I always had an inclination DD might be ADHD since junior school. She only really seems to have actually struggled with it the last year or so. As in, affecting her day to day life. We have just started the process of getting a diagnosis

@Cantfindthewordsddstruggling
I suspected my 16 yo dd may be ND at times but it was swooped to the side by those, who have more experience so I thought I was mistaken. Now it turns out her ED coach thinks she may have autism and PDA. For dd it’s the intransigence and stubbornness, she will fight to the death, her anxieties and sensory issues including a quest for her appearance to be absolutely perfect. She got angry with me on Saturday when I increased her breakfast quantities by adding a small Greek yoghurt and she came at my face, scratching my cheek and she has acrylic nails. Making her remove them for my safety was very difficult for her as she became less than perfect. She is more and more like her father, who I realised some time ago appears to be autistic.

As for your dd’s traits appearing only at 13, I think they appear more in times of stress. My fil is clearly autistic. Before autism was known about, some of dh’s family members whispered about him as being odd. As dh gets older, he becomes more like his father albeit he, unlike his father, is very sociable.

I am really struggling atm with my dh. He isn’t getting on board with FBT. He pretends to the coach that he is. But makes very little effort and leaves it all to me. I have tried to talk to him, we had a session on it with the coach on Thursday, where he said he would do more. But when I ask he becomes very defensive and when I try to talk to him, he becomes sarcastic and vile. Up to this point he had charmed her into believing that I was the one not letting him in whereas I couldn’t let him in because he wouldn’t do things to look after dd correctly. He is going to get his arse handed to him again on Thursday. I can see things a lot more clearly and he just isn’t cooperating with the process. When I ask him to do stuff he’s too busy doing things, which can wait. I have chronic fatigue and am so exhausted today.

Hello all, please may I ask for advice? I have been on this thread for about a year, under another name. DD is 15, diagnosed anorexic. Weight restored in April, and seen by paediatrics about 8 weeks ago, until the last visit Tuesday just gone, whereby they advised we put her on ‘hospital at home’ as she had lost 4kg in eight weeks. I understand that despite being a ‘healthy’ weight, she still isn’t well. She is very tired and has been getting chest pains (although ECGs and blood tests all okay). My questions are:

1 - Is a 4kg loss in two months especially concerning?
2 - How do I get family members to understand that she is still not well? She looks healthy to them (ie not typically anorexic) and so they perpetuate the idea that she’s fine. I understand that getting my daughter to understand that she’s not well is a different matter.
3 - When we go to paediatrics next week, if she hasn’t put on weight, or if she has lost weight, will they advise that she doesn’t go to school?

I feel lost and that my relationship with her is at its lowest ever point. I wonder whether a period out of school might give her the push she needs to work with us on this, but I fear that actually she will just succumb to it. Any help / handholding / advice, much appreciated.

@Jellycatspyjamas
The quicker an eating disorder or disordered eating is tackled the better. As your dd is adopted and already in the CAHMS system, hopefully she will get the help she needs quickly. It is good that she has admitted to you that there is an issue. This means that she is asking for help and her being willing and able to vocalise her issues will hopefully mean she gets a diagnosis sooner rather than later.

From what you’ve said, your dd putting food in the bin and forcing herself not to eat. The CAHMS team will be looking to diagnose based on what she is doing. If you have a look at this link from MIND, it describes different eating disorders. Your dd does have some behaviours described under anorexia. https://www.mind.org.uk/information-support/types-of-mental-health-problems/eating-problems/types-of-eating-disorders/

I would suggest as a starting point that you purchase the Eva Musby book Anorexia and other eating disorders, which is based on family based treatment. This gives you strategies for tackling poor eating. My dd is a little way along the process and I am now able to start to use these strategies, adapted somewhat. It is important that you try these as they are tried and tested. The charity, BEATS is also a great starting point and the helpline is very supportive. https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines/ If you have a root around the website, you will find lots of useful information and links.

You shouldn’t feel like a bad mum. Eating disorders are sneaky and creep up on you. It is easy to rationalise even when you start to notice a poor eating pattern and believe that it’s a phase. Children go through so many phases and it’s only when things really start to go wrong that things become evident.

Hi @Propermadam
My dd is a lot less far along than your dd and atm is gaining weight, early stages so maybe someone will have some better advice. I think relapse once your child has regained the weight is always a risk. I know for my dd that until we have tackled her anxiety, she could regress or relapse at any time so it’s a case of koko for us right now, especially as she’s refusing any kind of therapy or to engage in the process. Idk how this is for your dd or if there are reasons for her restricting again?

You speak of lack of support. That’s hard. Who in your family is not being supportive? Is it a partner / spouse, your parents etc? Have you explained that the medical experts have told you your dd has to rest at home as they are very concerned with her having chest pains? It sounds like they’re perhaps in denial. If you cannot explain in words they can understand, is it possible to keep them away from your dd for now?

I imagine paediatrics advised your dd to go on hospital at home, which I presume is bed rest, because your dd is having chest pains. That they have made an appointment to see your dd only a week after weigh in should tell you they’re treating this weight loss extremely seriously. This is something to explain to your family and to put a boundary up if they cannot understand.

As for going back to school, hopefully your dd has a couple of weeks yet before any decision needs to be made. If you did FBT, I imagine it’s a case of going back to basics, starting again. I know it’s hard. My dd’s relationship with me is in the toilet a lot of the time. It’s better since she’s eating more and feeding her brain. But I’m the one, who’s the threat to the anorexia, making her eat 6 times a day. So I’m the one, who gets attacked verbally and at times violently.

Idk how your dd will respond to not going to school. How was it last time, did she need to take time off? As I say, I am presuming you followed FBT, which is all about getting the anorexic to comply by wanting to do a desired activity more than they wish to control their eating. Can you go back to this?

I hope all will be well but please go to A&E if you have any concerns.

@Mummyoflittledragon thank you, I’ve ordered the book and will have a good read. We’re doing 3 meals/3 snacks and I feel totally food obsessed. I’m either preparing food, persuading her to eat, dealing with the aftermath of eating or cleaning up after making food. It’s never ending.

I know what you mean about guilt, I did think she was going through a phase - her restriction doesn’t seem related to body image, it’s about control over anxiety for her at least so far though I guess that may be in there somewhere. It’s just basic parenting to feed your kids which I think is where my guilt comes from - how hard is it. Very, very hard it turns out.

I’m just feeling a bit overwhelmed by it all tbh.

@Jellycatspyjamas
It is brilliant that your dd has accepted 3 meals, 3 snacks right from the off. My dd definitely didn’t and we are needing to pay for professional help. She’s there now but it has been a very rocky road and she still doesn’t get how mentally ill she is.

I understand that it seems all encompassing. We are just back from 2 weeks away. Apart from one day when we went out, I did not enjoy it at all. We self catered, which is normal for this type of holiday but we wouldn’t have had a choice in any case as she is only eating a narrow range of meals and she’s gone veggie as part of the illness, which in France is hard as they are great lovers of meat. I was doing all the cooking when dh usually does lots of bbqs and I make quick and easy meals whereas this time, it was very labour intensive especially with the limited equipment provided. Then there was constant shopping because dd suddenly got her appetite back and she was ravening (which is a good thing). I also have 6 alarms on my phone to remind me of meal time as I’m not well myself and this is taking me way beyond my capacity.

I was explaining this to a friend yesterday as Gina Ford for teenagers and unwilling eaters. It will get easier. It’s just a case of vigilance and keeping going until they are more able to take responsibility for their own eating.

She’s finding it hard, doing lots of negotiation about what she’s eating and trying to save food “for later”. We’re probably averaging 5/6 meals/snacks, which I’ll take for now. She ate lunch at school yesterday but didn’t eat the snacks I sent her with and then used those for her after school snack. She’s not used to me choosing her food and not negotiating with her, and finds eating a full meal very hard going but she’s trying and asked for hot chocolate the other night which is the first time in a long time she’s asked for something. It was made with full fat milk and a dollop of double cream!

It’s hard getting enough calories into her - so counterintuitive to our usual meals, I’m using lots of full fat dairy, home made cakes, dessert with dinner etc. Luckily my son is very active and quite slim so the additional calories won’t hurt him either so I don’t need to cook 2 lots of food. I’m hoping I’ll get into a routine but just now it’s all consuming.

It’s GCSE results day. Did anyone else’s child sit their GCSEs this summer? I feel kinda sad as DS didn’t sit a single exam. He seems extra moody today after engaging well for the past few days so I think he may be aware his peers are all receiving their results.

I’m sorry to hear that WoodenTrain. Yes, my dd sat her exams. She was eating about 500 calories a day and doubled her intake on average every 5/6 days, which got her through them. I think it was lucky she’d not been restricting so drastically for long.

How's it going curly?

That's for asking @Girliefriendlikespuppies
We had a weight check yesterday where she restored quite a bit of weight (by the magic of adding a single banana to her heavily reduced meal plan only). It's water loading, nothing else. ED clinic is aware and admit we don't really know her actual weight but since it went up, the admission talk is on hold for now. We had meal support twice and they did NOT manage to get her to eat the plan so said I should ensure she eats the plan with me at home - it's so absurd, it's almost comical (only it isn't funny at all). We are in the process of changing AD. Coming of Sertraline and trying Fluoxetine instead and they hope this will help. They said she may not be able to go to school in Sept (I can only assume they expect me to such up the practicalities but I am struggling at work - I cannot take more time off - I will just leave her alone at home then as I work only half days anyways). my useless H is still enjoying his neverending solo holiday and not back due before next month. He texts the DDs from time to time but other than that no contact.
We have weekly ED clinic appointments for now so will just wait and see. I am so tired and exhausted, really drained. I noted I don't get frantic or worried anymore that much, I just do what I can do and see what happens. There is only so and so much water loading she can do. If the weight drops more, there will be eventually consequences. She hasn't self harmed in a while though and hallucinations seem to have reduced a lot which is good).

Can anyone here relate / help?

DD is 16, diagnosed autistic last year, not been in school for 18 months, poor mental health after autism burnout. A few months ago, she started really restricting food. It was gradual at first - stopping certain foods, insisting on others - and over time she increased the amount of rules over food and would not let another person prepare food for her (I'm separated from her Dad). She makes the most beautiful looking salads but low calorie.
She also had exercise rules. From time to time she would then binge, just non stop eating of whatever was in the cupboard even though she was in physical pain, bloated and sobbing. Then she started getting heart palpitations, feeling dizzy, awful circulation and her weight was dropping fast. A GP referred to the specialist eating disorder clinic.

I was relieved, hopeful we'd get support. But they said it wasn't an eating disorder, because she didn't body check? And discharged her, saying she needed CAMHS, and they couldn't help because of her autism. We've been waiting for CAMHS since February, all they do is update her safety plan once a month.

That was a few weeks ago. She's not good. She is eating around 1200 calories on a good day but exercising for hours. It's more than the 500 she was on, but not enough. She's been a month binge free because her dad offered her a reward. She's managed it but the desire is there. She also is now body checking, thinks she's fat at 103lbs, just had a meltdown over her weight. She's also decided she's vegetarian and the number of safe foods is getting ever smaller as she'll exclude anything she's ever binged on. She won't accept me buying higher calorie foods - she checks everything.

I'm at a loss as how to help her. She's furious at the NHS, declares all medical professionals useless because they won't help her. But she screams at me almost daily that I'm making things worse and I just don't know what to do. I tried to take control of her feeding the first few days after the FEDS assessment and it went badly wrong (because they'd given no advice). She likely has PDA profile and me making any suggestions just leads to screaming. She has to want my help and those occasions are few and far between.

I'd be willing to pay for help, but I don't know what help she needs 😪 she's got a private psych appointment in a couple of weeks, but that is for anxiety and phobias. I just feel lost again.

@WhatsitWiggle I thought I recognised your username so have looked back at the thread and you and your dd have really gone through the mill. We are still awaiting diagnosis with CAHMS for potential ED and as dd won’t engage, they want to do an extended assessment. So far we’ve had no real help besides a call from a lovely lady, whose dd is recovered from ED, who offers support and a non judgmental ear. She suggested Jennifer Langley workshops www.charliewaller.org/what-we-offer/eating-disorder-workshops-for-parents-and-carers as well as the book ‘skills based caring for a loved one with an eating disorder’.

Dd also declares medical professionals useless but that is because no one seems to know anything about her medical condition. She is being treated privately as if she has autism and PDA as well as anorexia and ARFID. She also went veggie and at her most anxious heavily restricted to just 3 foods. Dd also has a lot of anxiety.

The private ED coach is very expensive. She isn’t local to us and was recommended on here as someone used to working with people with autism and she is very good. We have had to travel to her for dd to see her so it was a lot of driving. Now dd is refusing to see her and we, mostly I am doing it all alone but what I’m doing is working. Dd is still really mentally ill but she is accepting to be told what to eat to a certain extent and she has gained weight. She is now on 3 meals 3 snacks and she is waking herself up for breakfast at 8am if she goes to sleepovers at friend’s houses etc.

If you are serious about paying, there are a number of services available including in patient. This is what we possibly would have done with dd had she been 16. The Priory has private CAMHS if you want a diagnosis does assess for ED and anxiety at the same time. I decided not to go down this route as dd won’t engage and based on our experience in NHS CAMHS I don’t see the point in paying about £800 for an assessment if she won’t. They also treat. The woman that we are using also worked there. I can PM you the info I gathered if useful.

Wiggle I'd go back to the Gp and insist on another referral to the ED service, she sounds very obviously anorexic so it's mind boggling that they discharged her.

Has she had bloods and an ecg? She needs all the medical checks as physically she sounds very unwell.

I think FBT can work for autistic teens even with PDA but it might need a few tweaks based on what works for your dd.

What incentives/leverage have you got?

@WhatsitWiggle it sounds very much like an eating disorder and the sooner she can get effective help the better. The longer she has it the more ingrained it becomes and the harder it is to treat. We were also told that the NHS treatment would probably not work for our neurodivergent DD and that we would have to go private for the intensive slow-paced treatment that she required. In your shoes, I would find a psychiatrist who specialises in eating disorders and autism and pay for an assessment and take it from there. If needed a private psychiatrist can refer you to the NHS should a day unit or inpatient stay be needed but the threshold for treatment is very high and only the very sickest are getting beds so you may want to put together your own private team - psych, dietitian and therapist
@Curlyhairedassasin i hope things are ok for you and DDs. I wonder if it is possible that the self harm and hallucinations are less now as she is not following the meal plan and is taking control that way. Not sure what you do about it though. It is so awful to have to watch and wait for her weight to drop to a level where you get some effective help. So many of our kids have been failed by the system

@Mummyoflittledragon thank you, yes please to any contacts. I have DLA for DD which was earmarked for DBT but I tasked ExH with sorting that out and he can get I think 20 sessions on BUPA so there's funds available to a point.

I think in patient would destroy her. As much as she seems to think this is what she needs, the reality of losing any safe space, any freedom, her safe people and everything she uses to regulate I believe would set her mental health back further. It's taken so long to get her to the point where she will tolerate going outside, is engaging with 1-2-1 education, has interests again and is goal-setting, I don't want to lose that. I just want to add a healthier relationship with food to the positives.

@Girliefriendlikespuppies she's had multiple ECGs, all fine, and bloods early July which were all fine too. I've managed to get her to take a daily multi vitamin and iron over the last week, that was quite a battle, and there's a fair amount of reverse psychology at play to get round the PDA. GP this week suggested her symptoms are anxiety, and I did my best not to roll my eyes. I'll try to get through to the GP who originally referred, I know she was pretty pissed off DD wasn't admitted to the service.

I think it's because of the autism though. @Shanghai101 not that she doesn't have ED but that their standard treatment wouldn't be suitable. But it's the fact they just discharged with no advice and I've been winging it ever since. And whilst there are small improvements, it's not enough, she's still underweight, she still restricts, her body is still suffering.

Wiggle I find it so strange that the treatment offered on the NHS is not suitable for those with autism particularly as ED’s can cause autistic traits. Fingers crossed your GP will be able to get her help, it’s good you have their support.

When I met the NHS psychiatrist from ED CAMHS, she said a lot of people present with some amount of neurodivergence so for her, it was unsurprising dd was being treated privately as though she had PDA and autism. She told me they offer cbt-e but limited to the ED rather than anything anxiety based.

In my experience, the NHS diagnoses first then treats. And treats anxiety and eating disorders as a separate issues. PDA is very much anxiety driven. I had the same issue when trying to get an assessment with private CAMHS at the Priory and went round and round in circles until they finally produced a referral form for the type of assessment dd would need. By the time I got this back from the GP we’d already started with the private ED coach we are currently using and realised our money would be better spent on the coach.

The ED coach we are using is very much of the belief that the type of ED a person presents with or the root causes are things to be worked on / with. First and foremost for her, it is getting the person to eat. She doesn’t have the clinical qualifications to diagnose btw. Rather she is using her knowledge and expertise, tools, which work for the individual. This is why she is working as if dd has PDA, autism, anorexia and ARFID. She said in her opinion dd has ARFID and in times of stress, this tipped into anorexia. She is using what she calls modified FBT as straight FBT wouldn’t work for dd.

The psychiatrist was able to tell me she wasn’t surprised at the approach the ED coach is taking. Unfortunately this doesn’t mean she would be able to offer this to dd and we are still to be offered anything for dd on the NHS all, I imagine, due to NICE guidelines. Extended assessment tomorrow. I will be speaking to the private ED coach tomorrow before the assessment. There’s been a lot to get through and I haven’t brought it up with her yet. I’ll report back any info I have from my neck of the woods.

I’ve PM’d you the places I looked into / was recommended @WhatsitWiggle. I did also look at one other but in patient care only offered atm there.