Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Girliefriendlikespuppies hope all goes well for France. The uncertainty on how each challenge will be received by your child is so much anxiety to hold as a parent.
@GrannyRoberts I'm really thinking of you.
@nan that's so hard, your DD has come so far. I would be tempted to stick to the 95 but only because my experience w my own DD was that strict boundaries were helpful in her behaviour shifting. You definitely know your DD best and will make the best call for her.

@GrannyRoberts glad the first night went well and hopefully things become more settled.
@Girliefriendlikespuppies I'll keep everything crossed the trip goes well, at least her boyfriend knows and will hopefully support her.
@Glitterfarti us too, they have said they don't want to label ds as the treatment is the same but likewise I'm just guessing what we're facing. Has your daughter said why she's upset during meal times? Ds really struggled to put it into words but he describes it as a bad feeling which is worse with certain foods and when we tell him he needs to eat more, that's when the blow ups seem to start. Some pass faster than others and aren't too bad and some are horrific

Could someone please send me the wfh tool? I've lost my online link

Nan Getting a call like that must be heartbreaking. On one hand your dd is where she needs to be, but on the other hand she's witnessing poor sufferers at very different stages of this wicked illness and it's no wonder she's traumatised and ED behaviours are creeping back. Poor girl.

Girlie

I totally get your holiday anxiety. It's very hard to let them go. I struggle when dd has a day out choosing her own food. It sounds like she'll be safe and looked after. Much etter to have her first holiday away with some BF and parents than a girls trip to Ibiza which is mostly alcohol fuelled. Maybe her cal intake will be a bit less but the experience of the holiday on her mental health will be worth it. Plan lots of high cal meals for her return!

Granny

I'm glad last night wasn't too bad and I hope dd continues to settle into the routine of home. You've got this 💪

Girlie fingers crossed the time away goes well. I do get the anxiety tho. DDs DofE the summer she reached 100% was terrifying for me. * *but she was fine. I am sure your DD will be too.
nan gosh what a dilemma. I think you need to keep strong on 95% too. Esp with those behaviours. I agree with girlie that 95% was a tough time for us too. She was a lot better but not better and it seemed to get worse before it got better and she made 100% plus
granny * *well-done on the first night. Keep strong.

@Dinnerisburnt how was your GP appointment? Been thinking of you and your DD and hope you made some headway

@Lottsbiffandsmudge and @Girliefriendlikespuppies this has rung a huge bell for me.My DD is getting v close to 95 and has completely regressed...temper tantrums and huge resistance have resurfaced. Very helpful to know that this is not an unknown in this journey as has been v confusing and upsetting

We had a terrible time with dd for a few weeks as she got close to weight restoring. It was a huge shock. She also started some really debilitating OCD behaviours around that time. It was like living with a stranger who despised us. Her bedroom door and ceiling are damaged from the force of her slamming over and over because she couldn't cope with the noise of the washing machine spinning. Ironic as she was a lot noisier. I was advised to up her fats as much as possible and we got through it and her meds, once she finally agreed to try them, helped enormously.

@BagpussSaggyOldClothCat we are feeling that despising...so much rage...the ED is v rattled by her progress

The ED fb group refer to it as 'extinction burst' and around 95% wfh was definitely when I felt it the most, dd was absolutely vile to everyone, literally could feel the hatred coming off her aimed primarily at me but other family members got it as well. All the ED suddenly ramped up again (hiding food, leaving more food, more anxiety re food etc) after they had calmed down a bit.

But by 98% wfh she was much better, happier in herself, willing to eat fear foods that she'd refused for months and much nicer to me! So the moral of the story is keep pushing the weight up at least to 100% wfh although ideally higher.

Thanks for your well wishes re France, I really hope it is a positive turning point for her ongoing recovery.

Extinction burst makes a lot of sense. I wish the clinic could have given us a heads up that this was a possibility as we moved in this direction. I will batten down my hatches!

Very interesting to read about the "extinction burst" around 95% wfh. My DD has just passed that marker and we have certainly seen a change in her behaviour. Although I am sure that a lot of this is down to anxiety over discharge/transition I will bear this in mind if we see past ED behaviours resurfacing.

Sorry for all those having a difficult time. I'm struggling at the moment as DD17 is striving for independence and me and DH are clashing, I think he is burying his head in the sand whilst I am operating on high alert and the anxiety is really affecting me. This is DD's usual college day;

DD prepares her own breakfast cereal and tbf makes sufficient. Include FF milk (she was avoiding dairy when this started).
At college has a latte and maybe some waffles, DD has a sweet tooth. This does not happen every morning break.
Lunchtime at college she has a chicken burger or something similar from the canteen. She has ;skipped' a couple of lunches being too busy with her new friends.
At home off the bus she may grab crackers and cheese or some sweets, not always though.
Dinner is usually at 6pm and she often does not eat it all - says she is full as she has eaten at 4:30 when she came in. Dessert after dinner are occasional, less often than when we were refeeding.
She may have something at supper time.

Weekends she works and that interferes with the routine but typically she has breakfast - then lunch before work. Sometimes she is provided with snacks during her shift by her employer. She has dinner when she gets home, really the same routine as a college day.

There is a lot of freedom and independence in there for her. She is generally eating in college but misses morning snack a couple of days a week, missing lunch has happened on a Friday.

I am aware that she has missed lunch and I message her to remind her. but it is often too late. DH says she is wrapped up in college life and may not get to the canteen - I do get that, but I am so fearful that DD will slip back into old habits when she was skipping and disposing of her lunch at school, we had supervised eating there - the freedom of college is anxiety inducing for me.

DH is fed up of my obsession with DD's routine and says if I am concerned that I should take her to the GP for observation. He says I should speak to DD about my concerns as she is not as ill as two years ago. I sit on the side of the fence of not trusting the ED and DD's responses will be ED driven and not her honesty.

DH and I have been allies since DD became ill but now have a differing of opinion.

Those with college age children could you tell me what you do and advise me, do you constantly remind them they are being supervised? Do you weigh? If there is a skipped meal how do you deal with this? We have never said to DD that she can't go to college, she would hate this but if college is conditional on food and weight what can you do to stop her, she would climb out of a window and she is 17.

Nomore that is a very similar intake to my dd, not sure if that's good or not though 🫤

My dd has a bowl of granola with ff milk for breakfast, at college she tells me she eats chips sometimes a baguette sometimes mozzarella sticks, she eats a normal sized dinner at home and I still insist on pudding as well. She will sometimes have a snack as well but not always.

I don't think it's enough especially during the day but weight wise she seems okay so I have to accept it I suppose.

@Girliefriendlikespuppies thats quite reassuring that your DD eats similarly and appears to maintain. I am probably guilty of my mind being stuck in the refeeding stage when every mouthful and calorie was essential, maybe DD is in more natural eating territory. Think I have PTSD from the early days tbh.

Hey everyone.

Just been trying to catch up with what's been going on. Welcome to everyone who is new - sorry you find yourself here but you've found a good place for advice and support.

Glitter - how has it been going since discharge? Hoping the anxiety settles a bit for your dd, I can totally identify with your ptsd feelings, it is horribly traumatic. All the while having to put on the sort of serene confident mask.

Prosecco - sorry to hear there have been a tough few days. I keep looking for stories of recovery too and trying to get my head around the new normal we are in. How have things been today?

Nan - when is the next cpa? I think I'd be sticking to the agreed 95% if you can, it feels like quite an important boundary to hold. Could your dd have more passes at home to break up the time in the ward, and to establish good home routines as a compromise?

Girlie - hope the trip goes well. I can imagine it being quite hard to relax while she is away, but try to have some time for you while she is not at home, and it sounds like she will have a good time, which can only be a good thing.

Interesting to hear about the extinction burst, will brace myself for that...

I've been away on my work trip. It was a bit of a whirlwind but it was so nice to be away, although I did spend quite a lot of time parenting from afar by reminding DH of everything. I realised tonight that I haven't cried for about a week, which is a record for the last wee while... we have half term this week and so we are away for the remainder of the week/end. Seems to have been good for everyone to have a change of scene, even dd has been like her old self for moments here and there. Although lots of the Ed behaviours too, I think my DH was not very vigilant around the way she discards food or tries to squeeze fat out of what she is eating, and so we have had a fair few arguments about these since I got back. I also don't think he is as determined to force calories into every meal, so I'll be very surprised if she has gained anything this week. Will weigh her when we are home again probably...

Hey @greydoor glad your trip went well, even if you couldn't switch off from the ed I bet being away was so nice! Let's hope there is no need for anymore tears 🤗 unless happy ones for after the extinction burst?! Good luck for weigh day.
Today has been ok, he has managed mornings at school all week and really enjoyed some normal life. Each meal or snack is still very up & down it seems to start when he tries to leave food and we push for more. Sometimes he'll just do it and other times we get a defiant no followed by all sorts of cruel words and hatred. We are being weighed on Tuesday and I'm really nervous, I'd just like him to keep gaining so I feel as if we are on the road to recovery. He's tried a lot of 'fear' foods and there are glimpses of my little boy, one bedtime he said he can't wait to be better and feel happy again. When he became frightened of food he started feeling sad 😢

@Proseccoismyfriend that is really encouraging that he has already made the link between his fear of food and his happiness levels, gives you more to work with

Hello, I wanted to post to say thank you for your advice and support over the last few weeks. I took my daughter to see the docs last week, and they have made an immediate referral to the ED service, and have carried out an urgent blood test. I’m not sure how long it will be to be seen, but just the fact that we are in the system now is reassuring. The doctor was very understanding and very practical - no judgement.

Hi cats that's good to hear the doctor took it seriously and made the referral. We had a similar experience and I was very glad.

I'm not sure how old your dd is, but you can also be helping her in the meantime until the referral has been picked up. We implemented 3 meals (min 500 cal) + 3 snacks (min 250-300 cal) each day from the day we went to our GP. If your dd has been having very few calories you need to take care to avoid refeeding syndrome but otherwise it's a good boundary to establish in terms of needing the 3+3 every day. This is what family based treatment will also entail. I take the approach of maximising calories in each meal by using quite a lot of double cream, butter, nut butters and Haagen dazs.

We were referred to the Ed team on 1st September and are still waiting to be picked up, although dd is seen by camhs every 2-3 weeks for physical health monitoring. So it could be some time until she is seen properly depending on the services in your area.

Just quickly popping in with a warning about 'Boiling Point' on BBC1. Episode 2 has graphic scenes of self harm. I've been in a state since I watched it last night 😞

@greydoor glad your trip went well! It's so hard to switch off but hopefully just having some time away from home helped recharge you a bit.
@Catsback that's good that the GP took you seriously, we had a real fight to get any support so I'm glad your experience has been better.
@BagpussSaggyOldClothCat thanks for the warning! Hope you're ok.

I'm feeling miffed. What is it with all the lying? My DD seems to have turned into a compulsive liar. And not just around food, but just really pointless stuff like lying about what t shirt she's wearing under her jumper (oh I'm wearing that pink one today mum - when the washing basket reveals a different one) - why! Also just found out she told one of her friends that I wouldn't let her go to another friends house because she didn't eat a yoghurt. Also a complete lie! I wonder what else she's telling people about us. How do I address this? Ignore and focus on ED lies? Challenge? Will it pass?

Oh God Granny I'd forgotten about the lying phase 🙈 not sure if it's typical but my dd definitely went through a phase of lying about everything, some of the lies were ridiculous. I think it's the ED confusing and gaslighting them to the point they genuinely struggle to separate fact from fiction.

Bagpuss I still avoid all food related programs, thanks for the heads up and I hope you're okay.

So my dd has gone off to France, now that's she gone and I know she's arrived and is fine, I'm quite enjoying the peace and quiet 🙂

I'm spending today and tomorrow catching up at home and then the rest of the week have got various things booked in. It's my first proper break from being a parent in 17 years 😳

Oh @Girliefriendlikespuppies! Hope you have a good week to yourself, it's quite hard to switch off but hope you can manage it. And hope your dd enjoys her week away too.

@GrannyRoberts - so glad you mentioned that about lying, I've been really scratching my head about this with dd recently. It's really random stuff too, eg we have been away for a few days and I gave all the kids a packing list. When I came to put her bag in the car it was really light and so I checked with her - did you remember to pack the joggers and trousers my love? And did you pack your jumper? Etc etc. oh yes she says, it's all in there. So we arrive, and turns out she has packed one top, one pair of trousers, one change of underwear and no pjs. I don't get it - why would you both not pack enough, and why wouldn't you just mention it before we set off?!? I've had to wash her stuff every night... part of me wonders if it's slightly on purpose, trying to force an argument about something so she can be cross with me... or maybe it's not allowing us to have complete control over things - like a demand avoidance type thing. I don't know, it's perplexing though...

@GrannyRoberts we have the lying about really stupid random stuff too. Cannot get me head around it. DD loves it if I challenge her lies and gets a real kick out of it. We found it is best to ignore as it makes it less gratifying for her.

@Girliefriendlikespuppies @greydoor @Curlyhairedassasin it's just so weird isn't it. Reassuring that it does seem to be a phase others have gone/are going through. Some of the lies are so ridiculous and pointless, just doesn't seem to make any sense. I think our DDs are quite similar in some ways @Curlyhairedassasin, mine loves to be offended when I challenge her, so it is best to ignore as you say, but not always that easy.