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

[Curlyhairedassasin]

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

@Shedqueen yes, I’m standing firm on the 3 times a week max. I am utterly exhausted by it all

I’m still reading along here, and nodding at what you are all going through. You are all amazing people advocating for your loved ones during this difficult period. I wish you all the strength in the world.

How are people doing? Things have gone a bit pear shaped here. I’m so over the ED and everything that it has taken from dd and I. Her mental health is absolutely shot and camhs are no longer offering any support. I feel like I’m banging my head against a brick wall

I’m sorry to hear that @Cantfindthewordsddstruggling. What’s happening? Is your dd refusing to eat quantities or is it the gym?
I know your dd has been signed off. But CAMHS will offer support for 6 months if needed and fast track back in - down here at least so perhaps it’s worth making a call to see what they can suggest / offer.
Things are looking up for my dd atm. She’s eating well. The intervention was awful but worth it. She was really really grumpy from her brain being woken up again. Today that seems to be easing thank goodness.

I am new here. I believe my 12 year old DD may have an ED / depression or both. She still eats 3 meals a day and this not really changed but they are not large (I try to add any calories I can to them but she has stopped having butter with jacket potatoes for example). She has always been a very slow restrained eater. She will not eat any snacks and drinks very little, occasionally water. She used to eat a snack at least some days after school which she has dropped maybe 6 months ago. She plays a lot of sport (and has been at county level) but I've noticed her looking more tired / more minor illness over the last few months. I'm aware of the RED-S and feel she fits this quite well. She is also not going out with friends as much and I suspect some friendship issues have arisen (year 7) and she is really not enjoying school. In the past year she has grown a lot taller but her weight not changed. She ought to have put on at least 2-3 kg I think. She She is around the 4-9th Centile when a year ago she was around the 25th. The GP has organised blood tests, which she has just had and a referral to CAMHS. I have also just asked to speak with her school. She does not seem very pre-occupied with body image or weight.

Frankly I am terrified. I've not shared this with her yet (I spoke to the GP myself by telephone) and worried whatever she is offered she won't engage. She is very quiet and has always been very self-reliant and not forthcoming with her feelings. What should I do next? How do I try to get her to CAMHS? What are they likely to do? I've considered stopping some of her sport, but it really seems to help her mental health; she says its the thing she enjoys most in life (team sport, quite social too). She gets angry if I try to say she needs some more snacks to train better...

@LondonBridgeisfalling
When are you seeing Camhs? do you have a local ED team? I probably would ask for a referral to the ED team as Camhs do not really deal with EDs.

Do you know the weight and height?

If you think she is undereating, I would stop the sport for now or insist on the extra food - if not, no training and see it through. She may enjoy it but you are doing her no favours by letting her exercise extensively when she is undereating. My DD was doing extensive training, and was one of the top youth athletes in the UK in her discipline when she became ill. she had to stop it all 2 years ago.

Can you introduce 3 snacks in addition to the 3 meals. 3+3 (3 meals and 3 snacks) is the standard. Is she letting you make the food? Add fats (butter, cream etc) wherever you can to bulk of the calories. But as a start I would make food non-negotiable. If she doesn't eat. No sport. Your DD is still eating. I would try to nip it all in the bud now. It's much harder once the ED has been properly established and it's not something that will sort itself.

Also, do you know if she is eating in school? It's common that they only 'pretend' eat there.

I’d echo the advice to make food non-negotiable and ask for a referral to ED Services rather than CAMHS generally. In some areas, you can self- refer.

Do you think a word from her coach might help? My daughter seemed to take advice from others, especially if they said something similar to me. A good coach might also say that she can’t train if she’s underweight / loosing weight but not all are ED aware

Thank you both for your replies. Yes, she is thankfully still eating but I suspect roughly a few hundred calories per day less than she needs on average. Not dropped enough to be really notable day by day but enough over time to make a difference, as it has. I will try to get tougher with not going unless she has a snack. She will get cross with me and tell me she is not hungry when I try. When she had blood tests this week the phlebotomist kept telling me and her how dehydrated she was as difficult to get a vein - she does not drink much either, not even water. I've been trying this for years.

I do not know for sure what she eats at school (one reason why I have now contacted school). I think she does and can see purchases on the system. I don't know for sure that she is eating or how much of them she eats. I do mostly make the food at home. I am starting to make my other daughter overweight with this energy dense approach (also myself- I have some health problems and won't be able to walk at all if I put on too much weight).

I've considered whether I can ask a coach to talk with her. I'll try that route too.
I'll check what part of CAMHS she has been referred to; I've been in two minds whether this is more depression or a clear ED.

I agree with the advice above and also asking her coach to reinforce this advice. Your child is 12 so you can say that you know what she needs and to trust you. This is much harder with older kids

If her club has access to a dietician, then I would ask the coach to arrange for you and your DD to meet with her and agree a meal plan. You may have to pay for this but it will be money well spent. Hopefully, the ED is not yet entrenched and by acting early you can prevent it getting worse. GPs are probably not your best port of call at this stage because they do not have sufficient in-depth knowledge of EDs and by the time it gets bad enough for them to act it will be very hard or impossible for you to turn around on your own.
It’s hard to stop a sport they love, especially if it is helping their mental health but if she continues to under eat, she will have to stop it anyway. The best bet is to use her sport to add in butter on sandwiches and extra snacks to compensate for the sport. This can all be worked out with a dietician. Wishing you luck. My heart goes out to children with depression :(

Curly, how are you? I often think of you and your daughters and how difficult life is at the moment. I hope you are getting some support

Sorry to read your update Can’t, my DD’s MH is poor too and it takes weekly therapy from someone with specialism in EDs and constant support from me and DH to keep her maintaining (she’s not yet weight restored). It is exhausting. The only way I can keep going is to keep hope that little by little the therapy is sinking in and she is gaining insights and slowly rebuilding her self-esteem. Neurodivergence plays a large part in our situation - it has been so sad to see such a bright, beautiful young girl, with seemingly everything going for her, be ravaged by this illness

@Shanghai101 we hang in there. Her eating isn't great. Just cutting 10 cals here and 10 cals there. Having another weight check mid March. Hopefully she comes along the and doesn't refuse the weigh in again. She is still in the PRU which she likes but it's 3h per day and she doesn't feel academically challenged at all and is stressed about falling behind. Currently still looking for a school for her. deadline for EHCP completion is soon but our LA is doing less than 10% if the plans within the legal timeframe. We are struggling to find a small setting that suits and can meet her need - both in terms of SEHM needs but also academically. I am really stressed about the possibility of not having anything for KS4 - it will completely devastate her of she cannot do her GCSEs. I dont dare to think about it. Things with her sister are difficult too. Her sister started to physically attack her in response of DD throwing verbal darts her way. Things escalate several times a week. My older daughter is physically very strong (she is 17) and with her level of learning difficulties, it's just hard at times. I am mainly trying not to think too much about stuff and keep swimming which works half if the time. just focussed on the EHCP/school thing for now. One thing at the time and that sort of works.

How are things are your end?

Curly, things are okay in the sense that DD is back at uni and doing well, but that is because she hyper focuses on study. She’s struggling socially which is making it hard for her to embrace recovery but she is trying really hard and has come a long way in the last year. But she has needed a lot of support to get there, luckily we have been able to pay for it but it has meant a lot of sacrifice. .

I am in an autism support group and a lot of posts are around EHCP‘s and fighting LAs. I know some people have got their kids into small independent schools when there wasn’t another option for them. It sounds as though something like this would be ideal for your daughter. Is there a similar support group in your region, I wonder? Those moms are so knowledgeable. The group can be quite supportive too as all of the kids are suffering in some way because of their neurodivergence i.e. burnout, stress, self harm, eating disorders. In your situation, I would contact my local MP and lay it all on the table. Your daughter wants to learn and deserves an education. I know it will take a lot of fight from you and I hope you have somebody to help you.
I can only imagine how difficult things are with your older DD too. It can’t be easy for her to have a sibling with an ED. And likewise for DD2 to have a sibling with disability. So hard on all of you.
Since I joined the autism support group I have come to realise that life is particularly hard for ASD families. You are not alone Curly. X

Thank you for all messages. Can I ask how old your daughters are and how long you have been dealing with this? Thanks

@Shanghai101 yes, I have a fabulous local support group. bit of a lifeline for me. I am totally determined to push the EHCP through somehow. It's really good to know that I am not alone.

@LondonBridgeisfalling started at 11, now 14 and still in the deep end despite getting help pretty quicky. We had also a massive deterioration of her MH along the way and hit rock bottom. Her mainstream school kicked her out (now just doing a few hours a day in a PRU). We are also waiting for an autism assessment. Her neurodiversity is probably driving a lot of it. I sometimes think we didn't go against the ED quickly and hard enough. Once it is fully entrenched it becomes a different animal. Hence my advice to keep pushing food, and restricting sport and making it all nonnegotiable. Your DD will get angry. It's the ED. We had (and still at time have) a lot of aggression from DD in response to pushing food. Don't give in. It sounds like your DD is in the earlier stages where you still can turn it around.

@Curlyhairedassasin I am listening to all advice, frankly feeling guilty and terrified.

to anyone: did you try to weigh your child? I don't have an up to date weight, so am worried she might wight less than I think even...

@LondonBridgeisfalling we only weigh in the clinic and weigh blind (she is standing with the back to the scale and doesn't know her weight).

Not sure what the consensus is about weighing at home as it's something we never did (we also got rid of the scales). Did the GP no weigh her when you attended? Ours did when we went first time and got referred to the ED on the back of it.

Thank you. We have not attended GP yet. I could not get an appointment but I telephoned them and they referred to CAMHS and got blood tests on the basis of what I said.

@LondonBridgeisfalling my daughter is 18 and I’ve known about her ED for nearly 2 years.
Don’t feel guilty. There’s lots I wish I’d done differently but I did the best with what I knew then. You are doing the right things asking for advice. I can understand you feel terrified. Don’t lose hope but best to throw everything at it right at the start because early treatment makes such a difference.

Hello
there are so many messages on here I’m not sure how to search them all but my daughter is about to be admitted to an EDU after a period of starvation which saw her admitted to A&E, then sectioned for tube feeding in adult Acute medical ward (she’s 17). She also has v bad depression which is what led to her stopping eating and the weight loss was extreme and fast.
I can see from a quick read that many of you have been living with this for years - do EDUs not work?
The reviews are terrible, and she will be terrified and has to be ambulanced as under section. I fought to get her help as having her here with depression suicidality and starvation felt like being in hopeless hell. But now I feel like I’m putting her in hell - she will feel so angry and abandoned. She jsut wants to come home and says she will eat but she didn’t eat for 2 months before A&E so no one believes she will eat now.
Any information gratefully received or I can start own thread maybe?

@perrymason My DD was making no progress in the community (8 admissions for medical stabilisation) - she turned her life around completely in an EDU (even though she hated it at the time). Honestly, it's so hard to get EDU places that I don't think she'd be there if it wasn't necessary to keep her safe. I'll DM you my phone number and am very happy to chat if it would be helpful.

@perryI understand private messages are disabled atm. Feel free to ask anything.

@perrymason i understand that you and your daughter are terrified. I remember feeling sick all the time she in a general hospital waiting to move to the edu. She was being tube fed under section on an adult ward similarly. I went with her in the ambulance. To be honest, arriving at the unit was calm after the general hospital. She didn’t improve there but lots of children did. Although it was horrible for her being in hospital, I wasn’t worried about her safety. Please ask anything.

Nan thank you so much that is exactly what I was hoping to hear. Can I ask which one she was in and how long it took please? I realise everyone is different of course. my head is spinning and I have so many questions - I would love to DM you as I feel I’m taking up space on here but we can’t.

• was your daughter also under section? I was basically told yesterday if she says no she will be forcibly taken so I need to be encouraging for her sake even if I’m terrified.
• She will be so angry as she says she can eat but the tube feed is filling her up. Do they all say they can eat if they were just left alone? Her eating got less and less the more she saw Sfeds.
• are they allowed visitors - the reviews (some of which are horrendous) say they are locked in and not allowed visitors
• its far away from us - 2 hours on train and about 2 in a car so she will feel completely cut off from friends but the psych said if we refuse the next one might be further (not that refusal was an option). Was yours local? I spent hours looking for accommodation last night nearby.

I probably sound ungrateful but all of this has been so quick I’m lurching from one new stage to the next - I have felt like I’ve been watching her commit suicide in slow motion and tried to hard to get her this help but now it’s terrifying. thank you again

Thank you so much also she’s queen honestly I’ve been feeling so alone you can’t imagine how much this means to me. Anything you can tell me in answer to my questions too would be amazing