Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

Thank you

Mine was admitted, it was the turning point to getting him eating again. And the threat of going back really helped when he got home, if was trying to leave a meal or refusing I'd show him a photo of his hospital room and that helped him fight through. We are on our way to recovery, nowhere near like life beforehand but glad to be where we are now instead of this time last year. My son has anxiety and for some reason it's linked to food, possibly arfid and his weight was so low he had an thoughts and behaviours. Each day is a little better but there are some foods we haven't challenged yet, I'm doing this every week bringing in a fear food and his anxiety is sky high but I noticed this week when it was cheesecake it wasn't as bad as previous foods so I'm hoping we're turning a corner. He wants to be well and active and out and about with friends so all of this helps us he's very social. I really don't know where we would be without being admitted as at home he simply wouldn't eat, was curled up in a ball sobbing.

We had an emergency admission as DD's heart rate dropped to dangerous levels (35 BPM), ECG abnormal, low body temp. She got suddenly critically ill and was admitted to the HDU as she was so unwell. We had seen the ED team the same day earlier when the main obs were still ok-ish. If she is not eating and losing weight, get her admitted. Health can deteriorate very quickly without too many outward signs (DD was still screaming and kicking when I rang the ambulance - you would have never guessed how ill she was). Hospital was a small turning point for us. It was a general paeds ward and we where in to establish eating again and to physically stabilise. no therapy, it wasn't an ED unit. we were in just under a month. It was hard to get DD to eat again but the team managed to get her eating and putting on weight. We would have never managed that at home. That was well over a year ago. She is still eating her meal plan (in a somewhat restricted form) - we hover around 88-90% WFH. so we haven't unfortunately made too much progress since and a lot more mental health issues emerged but it was instrumental for us to get DD eating again (and she needed medical care - if they heavily restrict, there is a point where the body will not cope anymore. It's just a question of if and not when). DD was restricting to 700(ish) cals per day for 3 weeks and was at 84%wfh when admitted. not even that low compared to others. But by the sound of it, it will be the best place for her for now - it's a posituve step as scary as it sounds. @H0WDOESANYONEDOTHIS .

Thanks so much for taking the time to let me know these stories. I do feel like we are never going to do this on our own, getting her to eat I mean. She is on about the same calories 7-800 and ecg and blood pressure not good. Bloods still saying okay.
Will see what happens

Thanks again

@H0WDOESANYONEDOTHIS My DD was admitted to hospital for medical stabilisation 8 times, then admitted to an ED unit for 9 months. She is doing well now. I'd be very happy to talk to you on the phone or Teams if you would like to talk.

Not been on here for ages, but DD was admitted to hospital as a result of her first CED appointment. She begged me to take her home but was 68%wfh.
It was a huge turning point. She was in for two weeks in a general paediatric unit. When she got home she was so determined to never go back that she fought and fought the illness.
Just over a year later she started at university living away from home. She is a success story and lives life to the full. No fear foods and no issues around eating out. I'm sure that on the back of her mind she is always going to have a little niggle, but she has learned to live with it.

@NanFlanders goes to hear that your dd continues to improve x

So happy to hear the your DD is doing well @NanFlanders .

You're married? It's your house as much as his, I would get some legal advice though.

If the house is jointly owned, you can't change the locks. Get some legal advice.
Good luck.

we should have been a hospital admission as bloods, ECG, BP were all off and DD was restricting heavily and we had tried everything, ED outpatient unit, private team (dietitian, psychiatrist, therapist) but nobody could get through. She refused to go to hospital so the psychiatrist threatened a section. She then agreed to attend a private Day Unit (5 days, home at night and weekends), which was a real turning point. They got her eating regularly again and she has since told us that there is nothing we could have done at home to get her to eat normally. She follows a 3 meals + 3 snacks plan and has had a lot of 1:1 and group therapy which is setting her up for coping with life beyond the ED.
Progress has been slow due to neurodivergence (unfortunately. our NHS still is not able to adapt their treatment for this group, which ironically are those most likely to have an ED).
Happy for you to contact me if you would like to talk. Our journey has been slow and we’re still not there yet but life has returned to mostly normal.
For reassurance, bloods etc all returned to normal very quickly once she joined the day unit. But bone damage occurred, which we hope we can reverse.
Also, she was monitored closely in the first few weeks for refeeding syndrome (daily blood tests).

@Curlyhairedassasin does his family know how he is treating you and your Dds? If so, I hope you have their support.

@Shanghai101 - he is staying with his family (who live abroad). When he blocked me, I rang his mum to ask what is going on and she blocked me too. his sis doesn't talk to me and DDs either. They are all in cahoots and one is as bad as the other. I would put a rocket up my son's arse if he was to stay with me whilst he is de facto abandoning his wife and 2 disabled daughters in another country for the entire summer. Mil is fully aware of the fact that i work and that I don't have family in the UK and that both DDs have high support needs. At least she is far away and doesn't meddle otherwise (silver linings and all that stuff. I couldn't cope if she was local). I am really absolutely alone with both girls here. No family, just a few friends (with largely disabled children themselves and therefore not able to help in a practical way. but great moral support).

Curly it would be worth getting legal advice, where do you your family live? The fact you're so isolated is heartbreaking. I'd make the assumption he's left you and start making the next practical steps in terms of separation. He's not a good man, father or husband and you are better off moving forward without him. You could post on the legal part of mn to get an idea of where you stand.

How how did the appointment go?

girlie, we are in England but my family is in a different country (both H and I are immigrants). I just asked him via DD's phone to come back sooner as I really do not cope at all. DD has been blocked now too 😔

Curly can one of your family come over and help you? Have you told them how bad things are? I know it’s hard to reach out in real life but you need some physical support.
We are here for you on MN but you need practical help

@Shanghai101 - I only have my parents. Early 80s/late 70s with a host of health issues and not able to travel atm. There just isn't anyone but me. I just don't understand how I ended up in such a mess. I am pretty resilient though and tough going. I will get through somehow.

Curly, I’m so sorry, that is so hard on you. Put it all in your email to the psychiatrist. Everything will change for your DD when she gets effective help. She’s young and the outcome for adolescents is good. I wish I could help you ❤️

Hi- think I may be heading over to this thread.

I have a 14 year old DD, she is 15 next week, started restricting a little bit a couple of months ago, but would still then have days where she would eat normally. Everything seems to have become worse the last week or so, and yesterday I worked out she had maybe 500 calories.
So far today she has eaten 1 small chocolate rice cake, 1 fried egg, 1 small bag of lentil crisps (multipack snack bag size). This is all under massive protest.
I have realised this may be a bigger problem than we thought, she has lost a lot of weight. Her sports equipment that could hardly do up a couple of months ago as she was outgrowing is now swinging from her.

So will make GP appointment tomorrow. We have had some issues with gender identity and sexuality, a pretty intense relationship that seems to have ended, some bullying and then school refusal towards the end of the summer holidays. I think it's likely she is ADHD, all of these things we were slowly sorting but this seems to have escalated so quickly. She has a three month old baby brother and I was pretty poorly before and after having him- so just feel like such a failure that it has gotten to this point.

I hope I go to the GP and I am overreacting

Hi I hate to say it but I don't think you're over reacting at all sadly. It sounds like your dd has very much fallen into anorexias trap.

Anorexia is very much a brain based disorder that is triggered by weight loss and the 'cure' is to get them eating as much as possible as soon as possible.

Have a read back through this thread as there's lots of advice on here. Make sure the GP takes you seriously, your dd needs all her physical observations checking including bloods and an ecg. You may be able to self refer to the local ED Camhs service.

If she's been on 500 cals or less for more than 3 days I'd take her to A&E to get checked out.

Thanks @Girliefriendlikespuppies

Gosh really- I'll go to GP first thing tomorrow and see what the wait for an appointment is.

I have a blood pressure machine and sats/heart rate monitor at home so can do those myself.

She is still doing usual activities though somehow.

The other issue is there is no way they will get blood from her without sedating her against her consent. We have had to go to a special clinic just to get normal vaccinations done, last time they tried to draw blood for something a few years ago the dr overruled the nurse and did it without telling DD and it ended up in a broken vein and blood everywhere. What anorexia info do they get from blood tests please?

Thanks so much for replying

Hi rustic they get really important information on electrolytes (which if are out of whack can cause heart arrhythmias/cardiac arrest) plus glucose and things like if they're anaemic. It is really important they get blood, my dd is also massively needle phobic and it took two of us to hold her still to get the blood. A lot of clinics won't accept an ED referral without any blood tests.

If your dd is active I'd encourage you to stop all sports and activities, if she's not eating enough she won't have the reserves for additional exercise.

You need to get strict on eating, she has to eat 3 meals and 3 snacks a day, the standard treatment for restrictive EDs in family based treatment FBT which is where the parents take full control of all food and food related decisions.

Taking control is hard. It feels impossible but it is vital and your dd is likely to feel relieved on some level as currently she will feel completely out of control as the ED starts calling all the shots.

Do you know her current weight and height?

Hi @Girliefriendlikespuppies,

Thanks- on the go at the moment so quick response, but thank you for taking the time to reply.

I honestly have no idea how we will get blood. But I guess we may have too.

How do you "take control" of what she eats? I mean, I'm trying, but just can't get her to finish anything. Think we may have scraped up to 550 calories today, but it is literally me pushing all day and she takes so long. Luckily I'm on maternity leave- but god knows what would happen if I was at work.

I worry with removing the activities/sports that she will be come more depressed- which she certainly is at the moment. But maybe I have it the wrong way round- thinking the depression has caused the ED, but maybe the ED has been lurking for longer and has caused the depression.

She states that the smell and tasting food makes her feel sick, and she's just too full to eat. She hasn't really admitted to being hungry and then purposely restricting.

She is pretty health conscious, terrified of being ill, so maybe the doctor can get through to her about risks etc

Hey @Rusticanella sorry you've had to find yourself here, but you'll get great advice.

I'd suggest getting Eva Musby's book and looking on her website. She is a parent of someone with anorexia and her book and website are about one of the main treatment approaches, family based treatment (fbt).

Anorexia can really creep up on young people and families. My dd said the same things as yours - she felt full all the time, sick, sore tummy, etc. I did my best to encourage and support her to eat more but it didn't help, and probably just delayed us in starting to turn things around. Once someone is in anorexia, they very much are not able to change the patterns themselves, no matter the advice, straight talking from health professionals or scare tactics. Eating, restoring weight and health is the most essential part of the start of treatment, and often is a good indicator of eventual recovery, so usually it's best to start as soon as you know it's medically safe to.

The first phase of fbt removes choice and control from the person with anorexia. They are required to eat 3 meals (at least 500 calories) and 3 snacks (at least 200-300 calories) every day. They don't get to choose food, prepare or plate it, they have to finish everything and not leave even a small part. They are observed while eating and after (because they are highly likely to discard food). It's usually hard going, and causes distress to the person, as an anorexia person is terrified of eating. It's very distressing as a parent too. But it is necessary. They will probably shout, scream, cry, be physically and verbally aggressive, try to run away, withdraw. But despite this the bottom line is they must eat what is in front of them.

Good luck at the GP tomorrow. We were in your shoes almost a year ago now, and I remember it very vividly. We started 3 meals and 3 snacks that day, while we waited to be seen by the eating disorder service.

Thank you @greydoor

I must be honest- I am terrified. We would never leave the house. She has currently been musing the same bag of crisps for an hour and a half.

How did you know you hadn't pulled the trigger too early? Family are telling me not to make a big deal, just ignore it and she will eat more, don't make a battle. Which I kind of get, she was a BLE baby! But my gut is that being relaxed is meaning it's going in the wrong direction.