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!

Oh Nan! Am so sorry to hear that but am glad it didn't escalate in the way previous effort did. Do try to enjoy your break - eat all the ice cream!

So sorry, nan. Glad she was found sooner this time. Hope you manage to enjoy the the break a bit.

Not sure if we are going a bit backward. DD manages the mealplan mostly but now is refusing all home cooked food (unaccounted cals are the issue). She is refusing butter/spread on all toasts. She is having pudding as per meal plan but is slowing trying to replace everything for something with less calories. 5 cals off here, 10 cals off there, and another 10 somewhere else. she had restored weight quite a but her gain was very slow so I expect a drop at the next check.

both DDs are on each others throats non stock. DD1 (with complex needs) needs so much attention throughout the day. DD2 needs to have all meals and snacks supervised. She is ramping up efforts to hide food again. I am trying to WFH and DH is away for several weeks. I just want to explode half of the time and the rain doesn't help either. But I keep telling myself if could be so much worse. Hopefully just some small bumps in the road!

Curlyhairedassasin

Is she just eating ready meals? We had this with my dd in the beginning - a fridge full of low cal bloody ready meals 😔
It took a while to wean her off them. I wrote out exactly what went into home cooked versions, even the weights and cals which I admit isn't great but speaking her own language was the only way to get through. Slowly I gained her trust and we changed to home cooked versions and I very slowly increased her portions and added more fats wherever I could. We don't have ready meals in the house now which is a pain as I love an occasional m&s lasagne but can't risk it.

Sorry to hear you're having a crap time with the two of them and don't have any help. It must be exhausting. Do you get any time to yourself at all? Can you manage quick walk etc?

@BagpussSaggyOldClothCat

in essence yes. Or things like bread and a slice of cheese where she can easily add up the cals.

I will give the adding up of stuff a go. But what an exhausting way to cook but I really do not know how to break this cycle. Spoke to ED team who advised to be 'firm'. Sometimes you wonder. If only it was that easy. I love food and cooking and I just want her to eat proper stuff instead of this ready made crap.

It sounds like you were on a similar path to us so it is always encouraging to read that you managed to overcome it :)

No, not really any breaks. DD1 cannot be left without supervision at home at all and is unable to leave the house solo. I have no family or friends to help. But it's just a few more more weeks and then DH is back. I can cope!

Hi my dd was diagnosed with AN in April 3 days before her 13th birthday. She had lost 10kg over 3/4 months restricting food, filling herself up with water and extreme exercise. She was 80%wfh. She has responded really well to FBT and at her last appointment was 100% wfh which is amazing. I've been in hospital having major surgery and I'm waiting for results of a biopsy and I am back in hospital in 2 weeks to repair a detached retina.
While I was in hospital dd had braces fitted (it had been delayed until ED team were happy with her progress) she is now really restricted on the things she can eat because of the braces. I'm really struggling with snacks to give her. She can't have peanut butter or Nutella or anything sticky. Nothing hard like crackers or biscuits, no nuts. Her go to snacks were nutty cereal/protein bars, apple with peanut butter, Nutella on toast, cheese and crackers. DH has been doing most of her meals while I've been laid up and he gives her the same thing over and over which I know she will get sick of. She has a packet of crisps with her lunch and wouldn't eat more than one packet a day. I'm worried all her hard work will start to unravel if I can't get her to eat a variety of snacks. Any help would be greatly appreciated thanks

@mum2three48
What about puddings/deserts/ice cream. A lot of them are quite calorie dense and should be easy to manage with braces?

Hope your recovery goes well!

Hi @mum2three48 how about
Porridge with brown sugar and a banana
French toast (we make a protein french toast with vanilla protein powder)
Yoghurt
Flapjack (similar to cereal bars but softer).
Cake
Glass of chocolate milk/ milkshake/ smoothie
How long is she restricted like this. My DD had braces fitted when in recovery and the only things she couldn't have were fruit juice and fizzy drinks. She has eaten nutella throughout. And nuts etc

She does cleans her teeth really well and uses the interdental brushes to get any bits out.
She had one small breakage which the dentist repaired but she's been fine otherwise. Does your DD have a particular brace that rules out these things. It seems a little excessive!!!

@NanFlanders sorry to hear about your DD absconding again... I do hope you can now go back to enjoying your time away now she has been found.

Curlyhairedassasin

The firm approach works well for some, especially younger ones. I tried but just seemed to go backwards so went with my instinct and by negotiating with dd we managed to work out meals and a meal plan that she felt safe with. That was a turning point and she began to eat without too many issues and didn't lose weight from that point. It's definitely not the best thing to do with all and I think generally the younger ones respond better to firm FBT. It's trial and error and they're all different and parents/carers are all different and have other dc, work, relationships, our own medical issues to deal with. The list goes on. Sitting at a table for hours on end long term just doesn't work for most families.

I used to feel like a complete failure after camhs appointments being told over and over that I needed to take control of my extremely strong willed dd or she was going to end up seriously ill/hospitalised. It's easy for them to sit and say that. It was often the evenings after camhs appointments I ended up calling the samaritans as I felt I was letting dd down and she'd be better off without me.

Dd is still mentally poorly, her anxiety that she developed when very low weight is still there, but she's now almost weight restored, takes her meds and is managing to leave the house and see friends. We sometimes even have half a decent conversion and the odd hug. A world away from where we were when battling with FBT.

Than you for the ideas. I'm not sure if they are special braces as it was dh who took her to the appointment. Hopefully I can get to the next appointment and find out more. She did have to go back the following day as one of the brackets snapped.

Thanks for the ideas dd associates those as dessert and will definitely not eat them as a snack.

mum2three48

Nutrigrain elevenses and the Belvita softbakes are a cakey texture rather than chewy.

I would seriously ask as it seems ridiculous she can't eat crackers for instance! I was about to suggest cheese and crackers!!

Mum2three my dd had braces are a similar point in recovery and the only two things she couldn't eat were apples and carrot sticks! I kept everything else the same, they advise to reduce the sweet/sticky stuff because they're dentists are the end of the day 🤷‍♀️

I ignored all that including the advice to avoid sweet drinks and kept going as we had done.

She's had the braces off for about a year now and never had any issues.

Swatty I think you'll have to go through the pain barrier re the ready meals. I think I'd say 'they've run our/ I couldn't find any/they're too expensive' or any other excuse not to buy them.

Just cook the food and put it in front of her.

If she kicks off stand firm and don't back down.

If you give anorexia an inch it will take a mile unfortunately 😕 and it definitely sounds like it's trying to negotiate re reducing calories.

I’m struggling. How do you all cope - the constant worrying about DD has left no joy in my life. When DH and I are together all I talk about is DD, it is affecting my marriage. DD has other mental health issues. I have been up since 3am worrying about my other DC who exhibits autistic traits, I am so worried that they will also have a difficult path and I don’t know what to do - I wish I had DD ASD assessed when she was younger, now she point blank refuses to. I wonder to assess younger DC. Does a diagnosis help?

I am obsessed by anorexia and my DC’s mental health, I have researched and there are no answers, yet I carry on reading through the night and day. I am a shadow of the partner I used to be, I have no interest in anything and my children must see me as constantly miserable. I know this is classic depression, I need to know how to lift myself above the negative obsession .

Sorry for the self pity - I’m off to work now. It’s been two years now since DD was diagnosed and I should be dealing with my emotions better.

nomore, really sorry you are struggling .
Can you speak to your GP? You do sound depressed, and there is help out there. You shouldn't have to struggle like that. I think we are often on auto pilot and think all the time about how to help our DC and often forget ourselves in the process. I am the same. But please seek some support for yourself.

First, @NanFlanders so sorry to read your update but glad it was only a couple of hours although I’m sure they felt like an eternity, especially as you were overseas. But what a lovely DH you have insisting you have this time away for yourself. I hope you can enjoy yourself for the rest of the week.
Secondly, to all the regular posters here, thank you so much for your honesty and your generosity in sharing information. You have made such a difference to me over the last few months.
Lastly, @Nomoreplease23 we too have a DC with ASD. Late teens and asked for a diagnosis. They find that it helps them understand themselves and explain themselves to friends. I wish we had done this when they were younger but we honestly thought that having a label wasn’t necessary. School never flagged anything, results were excellent and they were so good at masking that we didn’t realise the impact on their MH - anxiety and depression. They are now in therapy for years of low level bullying and seem to be doing better. I was obsessed with reading about ASD until DD’s AN trumped everything. Now I am obsessed with AN and finding skills to help me be a better carer which I hope will accelerate her recovery. I am forcing myself to occasionally meet friends and regularly go on walks. It’s a huge effort but worthwhile. I would also definitely go to GP for help. And maybe consider joining a support group. I resisted this for ages but have joined now, initially to be a good role model for DD but I am finding it helpful. Wishing you all the best. You are not alone

I'm just waiting at my DS's initial assessment appointment. He doesn't want any joint input but has agreed to me coming along as there is apparently an opportunity for me to speak separately to the practitioner, which he has said he is ok with.

Am looking for a bit of a hand hold. How did things get here? Feeling very emotional and just wish I could wind the clock back and do his life again. All I can think of are all the ways I could have been a better mum for him.

I'm at a loss as well - how can they say that a 16 year old can make all their own health decisions and how can you support properly as a parent if your 16 year old doesn't give consent for you to know anything? I'm still hoping he will but I don't know.

Nomoreplease23

It's not self pity at all. You're under huge stress. Everyone here understands.

I agree with curly that you should see your GP. Can you request a double appointment so you can discuss your child with possible ASD and also your own mental health? It all goes together so would be better to get it out in one longer appointment. You may be prescribed antidepressants if you're not on them already. They take a while to work but really help take the edge. Are you the age where you could be perimenopausal? Depleting hormones can really affect your MH and even more so when you're also under huge stress so that's something else to consider.

The BEAT helpline is good and they also have a web chat.
Your camhs might do something for parents/carers so it's worth asking.

@RedChinaShoes
Regardless of whether he wants you at appts, your support will be essential in his recovery so I would sign up to BEAT workshops ASAP and read the Skills based caring for a loved one with an Eating Disorder by Janet Treasure et al.

Wishing you all the best. It must be a good thing that he is taking responsibility for his appts

@Shanghai101 thank you for that info. He hasn't yet been diagnosed with anything. His referral is for disordered eating. This is his very first appointment.

In that case, try not to worry too much as he is getting help early, which is so important.

Hi RedChinaShoes

It's not your fault your ds is going through this. ED is a complex illness and not the result of bad parenting. Naturally we blame ourselves (I've been there big time) but ultimately you realise that what triggers ED is really out of our control. All parents can do is be aware of the signs and get help asap and you've done that.

I hope the assessment goes well. My dd spoke alone for some of her assessment. Maybe he wants to talk alone as he has things he needs to say that he's worried about you hearing or he may feel that he doesn't want to upset you. Hopefully the therapist will get his permission to speak with you to give you an outline of what is happening and why. There may be some safeguarding concerns if he's feeling very low and things to look out for at home or you may be asked to look for and put away anything he may harm himself with (sorry).

He might be quite exhausted after the assessment so I'd resist the urge to talk to him about it for a day or two unless he wants to. It's a lot to process for you both x

@Waythroughwoods really relate to your post. In a similar situation here. 10 years in. Yesterday I spoke with my DD ED consultant about the latest developments (DD gave permission). Basically they can't offer anymore therapy unless DD agrees to weight restoration. DD won't be able to access any therapy via mental health services since they will say her case is too complex. Inpatient is always an option, but DD not want to - not even sure that another stay would be the right thing either. Said her bmi is hovering BTW 14 and 14.5. Going to discuss her case with rest of ED team to see if can come up with any other ideas. Feel totally sick of it all today ☹️

@Bluebuddha10 So sorry to hear this. Ten years - I can't even imagine. I've got a meeting next Tuesday about DD's transfer to Adult Services. Never thought we'd be here. Sending hugs.