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!

@GrannyRoberts
Thank you, we are hanging in there. DD is eating the 3+3, managed part time school but can only eat with intense meal support (in the end, school put staff in place - I had a bit of a battle around that). She is on olanzapine and setraline. Physically, she is a lot better but mentally, I feel the progress is really zero. I just hope things will get easier over time. It's intense and hard work but at least she is eating and gaining weight. We are far from ok but miles away from the time we hit rock bottom in May/June. I have accepted now that this is a long haul trip.
I hope you are ok too.

@Curlyhairedassasin well done on getting the school support in place, hopefully that helps a little. You're a bit ahead of us on this long road, and I really hope that as your DD continues to gain, the mental recovery will follow. You're doing brilliantly to keep all the plates spinning and to keep the weight going in the right direction. Do you get any support as a family now? Family therapy or meal support or anything like that? I think we may be on a slightly different path having ended up on a psych ward but it does sound as though there will be some ongoing support when DD is eventually discharged. I hope you have similar available.

@GrannyRoberts We do FTB and see the ED team once a week for obs and DD does some talking therapy there as well but the main work is done at home. But I feel much more in control now. I expect us to be under the ED team for a while as the mental side is just not improving. I am actually scared we may get discharged when we reach her target weight - seems to happen to so many others but so far, nobody has mentioned it.

Did you not build up to that though? I honestly think she’d vomit if I gave her anything that rich and heavy day one. And put her off food forever.
I thought someone said the main focus initially is 3 meals a day and 3 snacks then work on the calories and amounts later? I’m floundering a bit as I’d expected the GP to be concerned.

She’s always been allowed whatever snack and junk food she wants as she’s always been slim. Her choices will always be carby and beige and tiny amounts. Plain pasta, chicken nuggets, skinny chips, margherita pizza, any bread without seeds. She doesn’t like much flavour & She’d never have a salad for example! Ive actively encouraged ‘junk’ over last 2 years as she’s EXTREMELY fussy and I’d rather she had pizza / pasta / rice etc than just poke at whatever we are having and not eat. She’ll now have a teeny bit of pesto and Parmesan on pasta, and a teeny tiny bit of Bolognese with pasta (she doesn’t like the lumps and I have to use passata not chopped Tom’s as she hates tomatoes). She doesn’t like veg other than peppers & cucumber. She doesn’t like eggs or anything tasting eggy. She doesn’t like cream other than squirty. She likes most fruits but not bananas. She likes sweets and chocolate but not puddings other than apple crumble. She certainly has ARFID tendencies. 🙄🙄

Also some are saying they are doing FBT and others CBT what’s the difference please?

im wondering if I go back and demand a dietician referral as reading through what she’ll eat make be realise it’s no wonder this is hard work. And I’ve zero resistance or the usual AN stuff you all face!

Reading your posts about energy being needed for repair and the stalling of weight gain makes sense but is equally worrying.

@Threeyearsalready in a way it’s good to know that your DC is also sleepy etc. Hopefully once weight increases this will resolve.

@Curlyhairedassasin ok I’ll try and count the calories - I cook most things from scratch so not sure how easy that’ll be without weighing everything. Your snack list isn’t too overwhelming but it’s the and’s! She’d have a protein bar or a yoghurt or a pain au chocolate or a pack of crisps (hates nuts other than smooth butter annoyingly) or toast with peanut butter but would struggle with a combo. How long does it take to build up to this please?

@Curlyhairedassasin great that you feel so much more in control of meals and have DD's weight in a better place but can totally understand why you'd feel anxious about being discharged while those harmful thoughts are still there. Hopefully that won't happen, it's difficult isn't it when we all know how stretched services are and we've both by the sounds of it been the people waiting in that queue. Be prepared to fight to keep that support for as long as it's needed.

@Threeyearsalready

1. her birthday was May - 1 out if a hundred at that weight isn’t good!
2. The BP at home was 80/50 but 95/50 at GPs but we’d been rushing. I thought she’d do a standing BP & HR given DD said she gets dizzy a lot. But she just told her to get up slower and take her time.
3. Ahhh so following CBT is about establishing the pattern & timing first then the calorie amounts? C standing for child?
4. crikey, I wonder how & when she was vomiting without you seeing her. So so sneaky. I don’t think she’s purposely vomiting - it happens every couple of months or so as a one off and says she feels better afterwards. Always tells us. Can’t work out why. Had thought hormonal but not started periods as yet. I’ll keep an eye out though and watch her eat & for a while afterwards. Maybe start TV dinners as a distraction - I’ll have to monitor that though as with her adhd she may just not eat! Then it’s cold or hard or soggy or not nice and refused.

Notdonna, where to start...
I don't agree with that everyone should aim for "average" weight as it depends on other things.
Do you have the red book you get when they are born, with vaccination, and weight and height? Or online are some BMI curves (American I think), just to see where she used to be on the curve.

The fact that she is dizzy and sleepy is a sign her weight is just not enough. Whatever the cause (physical cause, chronic stomach problem, chronic viral??)

Yes to pushing too much food too soon. Low weight can result in slowing of the stomach etc. DC ended up vomiting when I pushed too much (after she had a fall due to low BP...). So (smaller) but more frequent regular meals to start of with. This is also advised to eg people after major surgery with no appetite .

In general FBT is the standard treatment for ED where parents take control. This didn't work for us (I think generally more difficult in older teenagers). CBT-E. Cognitive behavioural therapy. Child takes control (yes really). Small steps with feed back. The idea is that she gets weight restored and learn to what to do when relapsing (which worries me when off to uni)

DC ended up around 76%wfh but continued school as it gave her some structure and she likes school.

And anyone in real live who knows me will recognise the story 😁.
But hopefully if it can help someone....

And for what it's worth. She takes multi vitamins with minerals, extra vit D and sometimes extra vit B as advised by someone here

@NotDonna It took a few weeks to build up. We did it with the ED clinic together.

They should really do a sitting and standing BP. I cannot remember why but the change between both does mean something. What is her heart rate? they should check that too. It sounds like your GP isn't really clued up at all. Is there someone else to see in your surgery?

And when you see GP ask for bloods. Not just children with true eating disorders need bloods checking. She is underweight.

and ECG should be checked too.

Thank you all so very very much for taking me seriously. I feel a bit of a fraud as she’s not showing classic ED symptoms.
BUT as you point out threeyearsalready she is most certainly underweight and that needs addressing.
She already has multi vits due to her being such a fussy eater and not liking many fruits & veggies.
yes, there’s a few GPS there - none are great tbh and there’s always a few locums- I think this one may have been.
Annoyingly I’ve no idea where her red book is. I’ve 3x DDs so do get their info muddled. She was defo born on 50th for everything but weight dropped rapidly as she was allergic to BF, had to be on nutramagen and very slowly introduced to cows milk as a toddler. So the chart would be skewed. She never regained 50% - more like 25 for height & between 9th & 25th for weight. I can certainly find the nhs charts and work out where she should be according to 25th percentile as that’d be more reasonable for her. Thanks, this is a good idea!

The thread is moving fast so I'm sorry I can't remember who posted about waking them up. I wake dd in the mornings and take her breakfast in to her even if she doesn't need to go anywhere.

At the height of her illness she would 'sleep in' and skip breakfast but this is an common ED 'trick' so I'd try and get your dd into a routine of waking up in plenty of time to eat.

Sending love to everyone and I hope you all have a peaceful weekend x

That was me bagpuss thank you! I went in at 930 to get her going with bfast. I think during the hols I’ll allow til 9am even if nothing planned otherwise getting a snack in between bfast & lunch will be impossible.

When your DC are at school how do you deal with morning snack as most senior schools don’t have a break between registration and lunch?

If anyone else is interested in the ‘red book’ charts you can find them at rcpch.ac.uk

Notdonna tbh your dd sounds a bit like me as a child, I was so fussy!! I didn't eat any veg, very basic fruit (apples, banana) I wouldn't eat any sauce on pasta or on anything really. I didn't eat eggs either. I lived on cereals, toast, anything beige, chocolate, biscuits and crisps 😬

My parents pulled their hair out with me, I got much better once I started buying and cooking food when I was 18/19yo and eat a fairly varied diet now. My advice is to just give your dd whatever she likes, if she wants 10 chocolate bars a day that's fine, if she fancies a massive bag of crisps then great.

I know you're saying she's not got any anorexic behaviours but these behaviours can be sneaky so saying 'I'm full, I feel sick, don't make me eat any more' is all classic anorexic talk.

I'm so done with everything (although I know in reality I can't be).

D14 self harmed again last night and immediately said it was my fault because I wasn't caring for her in the way I should (despite her telling me to go away and leave her alone). She's done this a few times and it's so controlling, but also concerning as it's worse day time.

She was cross because we're being super vigilant and watching her - we thought she might be purging as she'd lost 1kg and shouldn't have one what she'd had. Turns out she'd been hiding food and then flushing it down the toilet a while later.

Things are so tough at the moment - I had a sudden family bereavement this week just before a 12 hour day at work that I couldn't get out of so no time to process, DH's dad is dying and his job is also at risk. My work is really intense and I am suffering really badly from fatigue, aches, just generally feel terrible.

It's the lack of empathy at all that's getting to me when she's screaming at me. I feel like screaming back and running out of the house and not coming back. I won't of course but the holidays are so relentless with having to worry about what's she's doing at all times whilst trying to work

Thanks @Girliefriendlikespuppies were you underweight too? I let her eat as much chocolate and crisps etc as she wants. I don’t worry about the lack of fruit & veg btw. But I hadn’t thought of her ‘being full, feeling sick’ as anorexic behaviours. I guess what I meant was her food choices. If it states calories on the menu she’ll choose a high one providing she likes it. This is what’s throwing me if that makes sense.

@LittlePickleHead fuck that’s hard! Sending love and strength. Do you have any support?

@NotDonna my DD is often "full" or "sick".

Little sending hugs and solidarity, I've been there, I can remember fantasising about getting a train to Scotland and hiding out on a remote island. Be kind to yourself, it's not your fault, life is shit and your dd is under the EDs spell. It's a good thing you worked out what she was doing and the ED is pissed off as you're on to it.

You're doing a great job.

Notdonna I was a skinny kid but not underweight until I was a teen and went through a period of illness which caused about a stone in weight loss. I didn't develop anorexia but my anxiety went through the roof, I was basically housebound for a year (I was 17/18) regaining the weight sorted me out and I actually went travelling the following year!!
Have you had a look at complan to see if that could be added to anything your dd might eat? Likewise powdered milk can be added to food/drink to increase calories.

We're plodding on here, dd has found a summer job as an ice cream scooper in a kiosk!
I'm pleased as it will give her something to do and some structure to her week which she definitely needs. As always I worry about the food side of it but am hoping she'll be okay, she seems fairly settled at the moment.

She also started driving lessons last week which I think is another incentive to stay well.

@Girliefriendlikespuppies yes I’ve got some of the FF powdered milk. Annoyingly it made the regular milk bitty. Maybe it works better if warm.

Well done to your DD getting a job! That’s a great accomplishment and starting driving lessons will be a huge motivator. Are you taking her out too? I did will my two older ones and it’s not easy! There could be disagreements.

LittlePickleHead I'm so sorry to hear of your loss and dd self harming and the other things you have going on. My dd blames me for everything that is wrong in her life also has zero empathy for anyone else's issues. I'm getting better at letting it not get to me as much and have found ways to distract myself from the guilt she piles on me, but there are times that it's almost unbearable and I want to run. I've called the Samaritans a few times who have been absolutely wonderful. It's a lonely, thankless and scary life being the parent of a child with ED, always on edge waiting for the next issue while trying to keep on top of normal life and responsibilities. It's no wonder it all gets too much sometimes. Please do reach out and talk to someone if you need to. I'd get your physical symptoms checked out too as it could be peri symptoms if you're around the right age.

Girliefriendlikespuppies Great news about the job and the driving lessons. Grear things to focus on and build maturity and resilience are just what's needed for any young people nowadays, but more so for our ED kids! I hope all goes well for her.

@LittlePickleHead it is so hard. I also found that my DD was hiding food. She currently hardly talks to me but I try to remember what I read on an earlier post which said that the angrier she gets with me the more it is the ED fighting back to the challenge. When she was hiding food and I didn’t know she was much more pleasant to me. The only thing that keeps me sane is referring back to the Janet Treasure book and trying to stay calm and model their communication style. It also helps me understand what she is feeling. It doesn’t come naturally but none of this is natural! BEAT have also been helpful. I am so sorry for all the other things you have to cope with as well as the ED.
To everyone else, thank you all for being so generous with your advice. It has helped during some very lonely times