Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@Raspberrysins I really don’t think they will be able to do anything. And I wish for your dd’s sake they can. But please be aware silver is a big step up from bronze. My dd had to pull out of Gold a couple of months ago as there is no way she could complete the practice. I wouldn’t have let her do silver either in her state even though she’s within normal weight range.

Dd has silver already btw and was told categorically for both Silver and Gold she must complete the practice expedition. Dd and another girl made darn sure a team member completed the practice run by taking the heavy elements of her kit on silver practice. It states on the website completion of the practice is mandatory for silver and gold, not for bronze. It’s really gruelling tbh. The team member, who struggled with silver practice pulled out of the gold practice part way through last week btw.

This https://www.dofe.org/run/expedition/requirements clearly states the practice completion is mandatory. I know this isn’t what you want to hear, however, your dd can potentially do it next year even if it isn’t with her cohort. Or she could skip to gold if offered in 6th form. Alternatively, gold can be done externally. There are groups you can join and the cost from a quick google I did is about £100 more than the school was asking.

@Raspberrysins an option for DofE might be to do the walk but only have a day pack, not the heavy rucksack. It was offered by the school for my DD14 who did her bronze walk last weekend.

Sorry but surely it’s a hard no. How on earth can she think she can do that arduous expedition with her stats?

Might work in your favour as a goal to getting her to eat properly. This worked well for us as dd felt the same about post gcse Boardmasters desperate to go we said no way was she going unless she hit her target weight. Which she did.

Indeed talk to the school, they did offer a few alternatives,
In the end dd didn't take the alternatives (also some other reasons for this) but did gold dofe with an external company....

I agree DofE should be a hard no, I appreciate your dd might be upset but going on it could make her seriously ill. I think they have to realise that if you don’t eat there are consequences 🤷‍♀️

Im glad the appointment went okay though, it sounds like they listened and are concerned which is a good thing.

Going against the grain here but CAMHS said Ok to my DD for silver D of E practice at 88% wfh. They saw her the day before she went to sign her off and then again when she returned and she managed to put on 700g.

@Libre2 that’s interesting to know.. it’s so conflicting on here and of course every case is different. In some ways it gives her some motivation - something to aim for , something to eat for. Of course I wouldn’t want to put her at any risk. Did your DD school make any concessions? She has lost all hope otherwise which is what’s so awful. If she doesn’t put on weight then obviously it’s a hard no. I know that. But 89% wasn’t as bad as I suspected.

We got them to take DD’s sleeping bag and sleep mat in the van rather than carrying it and they let her keep her phone so we could keep in touch with her. It was an external company doing it and CAMHS said we had to email them to say what was happening and they should keep an eye that she was eating. I don’t actually think they did and I was exceedingly anxious the entire time was away but she did really well. I was astounded that she put on weight within the 4 days between weigh ins as she was walking 6 hours a day.

Because of conflicting advice on here it's best to talk to school/DofE and see what they can offer.
One of the things was joining the bronze group group as part of her gold practice session.

Oh yes that is the other thing - our D of E was the last two days of the Easter holidays which meant that quite a few people missed it due to family holidays - they are offering another session later where they will mix up the groups.

@Raspberrysins @Libre2
The conflicting advice will possibly be because WFH is just and an indication. Children, for example, whose natural physical state is very slender (and I’m talking before becoming unwell), will get to lower WFH before suffering adverse symptoms and may never reach 100% WFH and yet be fully recovered.

To put that into context Libre2, I just looked to see if you posted your dd’s lowest height and weight and you did. 7 stone 9 and 5 foot 9. The lowest weight I managed to get for my dd was 48.3, although she may have weighed a little less at some stage, but won’t allow weigh ins. This is around 7 stone 9 yet my dd is about 10cm shorter than your dd. Dd was extremely physically and mentally unwell and at that weight, didn’t believe she needed to eat to live. Food for her was poison.

Idk dd’s current weight. She won’t let me weigh her. Maybe 55kg, could be a bit more. She’s still very mentally unwell. If she’s this weight, she’s really edging closer to the 100%. But I don’t think 100% for her will be enough. I’d say at least 110%.

And as I said upthread, I would NOT be letting my dd do a silver expedition at this weight (let alone the gold she dropped out of) because she isn’t yet capable of feeding herself. She’d just forget to eat. As is, I often have to take her breakfast to her because she’s too busy putting her makeup on and doesn’t have time to go downstairs to collect it.

@Raspberrysins only you know how your daughter is, both mentally and physically. It sounds like DofE might be the motivation she needs in order to eat and gain weight.
My daughter did her bronze at 89%. She's not fully weight restored but is up from 70% and a different person mentally to how she was last autumn. CAMHS had no issue with her doing it.
Maybe try and establish if CAMHS have said no on medical grounds or because of food refusal etc

Yeah it’s true that you have to look at where your child normally sat on the centiles, at my DDs lowest weight she was 90% wfh and at that weight she was v v ill (delusional thoughts, periods stopped, bp low, hr low, hair falling out etc) but she’s always been above the 50th per centile for weight and height.

Irs also hard to know how much of the desperation to do it is ED led. My dd would have begged me to do an arduous long walk but that had nothing to do with actually wanting to do it and everything to do with wanting to burn calories.

We have our assessment on Friday this week, I hope they still take it seriously despite the fact that she is making good progress I think. CAMHS so far have been great, and seen us at least once a week since this all started - so at least 5 times in the past 4 weeks (with an extra one for good measure for D of E). DD has had another gain of 800g this week and is now at 89% wfh.

She has said that she is fine as long as someone else makes the decisions around food, although admits that she does struggle with spontaeneous eating (so she doesn't) and also struggles when she knows it's high calories. That said, she is still eating high calorie food. She has also told two of her close friends what is going on. Is that a good sign? No idea.

Hi everyone. I know the phrase is ‘no food is bad food’ but is sufficient weight gain possible without eating doughnuts and crisps etc ? We are getting her to eat nuts , more cheese, milk, olive oil, carbs like pasta and bread, chicken, hummus,full fat Greek yogurt, avocado. Plenty of eggs. Etc. however she is finding it hard to eat things she perceives as unhealthy fats and sugars. I know it’s early days and I’m hoping things improve. She’s had much more than before so hoping for weight gain. CAMHS didn’t give us a calorie goal as she’s already obsessed with those. Just 3 meals 3 snacks. We are gradually taking more control but it’s very hard. I guess what I’m asking is this ok in the early days at least? The camhs nurse said that if we went too hard to early then she’d likely not trust the process. No meal plan yet until they ‘present the case’ to the Drs tomorrow.

Also she’s had some loose stools today is this normal too?

My DD has gained all she needs to with nothing "unhealthy". She's had some high calorie stuff - peanut butter, home made sauces and gravy etc- but won't have most desserts, cakes etc. That means we're not out of the woods with the ED, and maybe we could have had a different outcome on that if we'd pushed those foods sooner. But she gained quickly and engaged with camhs throughout
So it is possible to get to a "safe" weight if she's eating regularly and lots

I personally think it’s worth tackling fear foods early on tbh, it’s not going to get easier and why should the ED take away the enjoyment of foods that are meant to be enjoyed! I would give dd pieces of chocolate as a snack (take them out of the wrapper, cut them up and put them in a bowl) and pudding became the 3rd snack of the day.

Crisps were also a big fear food, again I would plate them up and give them to dd as part of her lunch or as a snack.

Re loose stools could she have got hold of any laxatives?

I definitely agree it's worth tackling them early on, and part of me does wish we'd gone harder on that. I just wanted to reassure PP her DD can gain without and that might be better than not eating at all, for now.
My DD would argue she doesn't like the things she doesn't have, it's her not the ED apparently. I'm not convinced, which is why we know we're not out of the woods!

We have our first weigh in for a month today, DD has just been seeing her therapist each week and not the ED family counsellor so no health checks. Part of me thinks it will be fine, she clearly looks healthier than when she was really unwell and there's no behaviour that would suggest she's restricting or over exercising again. But it's always a nervy time, and her mood definitely suggests she's anxious about it!

It is worth tackling them, but we focussed on getting DD to eat all the family meals she ate before the ED. Including dishes made with red meat. So spag bol, chilli etc. She was not a sweet tooth girl and so I focussed on fear foods I knew she loved eg crisps, pizza. It was still tough.
Even after recovery she insisted on ordering fish every time we went to our favourite steak place. Which we did for celebrations. We went through both brother's GCSE results, their 18ths, them passing their driving test, her 16th... and finally on her 18th birthday a full 4 years after recovery she ordered a steak.
I said nothing. But kicked my DH hard under the table and did a happy dance inside.
They can hold onto behaviours for a loooong time after recovery.

I can relate to the internal happy dance. DD ate eggy bread on a recent trip away and I messaged DH saying I could cry with joy. The next couple of days were harder as the ED clearly wasn't happy but we ploughed through and I take that as faith she will get there with current fear foods. It's good to hear progress can still be made years down the line!

Thanks @LurkyLurkyLou and @Girliefriendlikespuppies that’s both reassuring and also I agree about fear foods still needing to be tackled. @Lottsbiffandsmudge your post made me smile. I can imagine the joy ! I guess we’re aiming for total food freedom and that does mean being able to enjoy all foods. My DD thinks she shouldn’t be made to eat doughnuts etc. yes there may be some people who will never touch one.. however surely most people sometimes ‘fancy’ something like a biscuit / crisp and should be able to enjoy in moderation. I’m sure she’s not using laxatives, I think it’s a response to increased milk or something. She seems ok today.

I'm a bit worried that she’s determined to be the one in control of her recovery, she is strong minded and wants to do it ‘herself’. When she says she doesn’t actually like crisps / butter on sandwich / red meat / I do know this is the ED voice. I am hoping to tackle this is stages. She eats what we cook as a family though, but she doesn’t like me to plate it up for her. Working on this too! Magic plate method definitely won’t work for us.

good luck with the weigh in @LurkyLurkyLou

thanks @Raspberrysins we had a small gain, securely within the 'safe' range, which is a relief. DD seemed quite calm with us discussing tackling fear foods step by step with camhs too.
Also had bloods, ecg and last A level mock today, so quite a day and so far so good. She's gone off on her own to watch football tonight, which would have been unthinkable a few months ago, and I think this mum needs a lie down to deal with all that in one day

Hi all. I'm after a bit of advice. Last week my DD put on a staggering 1.4kg. totally unexpected. She's never managed to eat the full amount on the plan. We'd been away on the weekend so she'd eaten a bit more than normal but nothing that could account for it.

Her nurse suggested she may have drunk a lot of water to try and trick the scales. I didn't see any evidence of that and she was distraught by the gain. Nothing in her pockets etc.

My mind is racing though. If it had been a result of her visibly eating more I'd be celebrating but instead I'm worried she's secretly binging. I haven't noticed any food missing and she's with us all the time but I know people with an ed can be sneaky.

Anyone else had this happen? Any tips for what I need to be wary of? She's 15, nearly 16. I've suggested to DH that we hide the alcohol tonight. Sounds odd but it's the only high calorie thing i can think of that she might be accessing without our knowledge.

@Weightlossworried it may have just been from what she’s eating, when they start eating more there’s often no gains for ages as the body has a lot of internal repair work to do but then the weight will start to recover.

Id do a secret happy dance but stay absolutely neutral in front of your dd.

Did they tell her her weight? I’d strongly advocate blind weighing if your dd was upset by the gain.