Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

No they didn't - unsure if they have a crisis number
She's done around 450 calories today
Refused dinner so she's in bed
I'll offer snack in a bit but i can't see her eating anything anytime soon

@summertimesadness24

DD16 was taken to A&E early November we then transferred to an ED clinic via CAMHS and in the first 6 weeks she ate barely anything. We were having weekly meeting and meal plans which just didn’t work. She lost another 3 kilos during this time and a week before Xmas I emailed them and asked them to admit her as I couldn’t get her to eat. We discovered hidden food all over the house. She fainted and fell down the stairs and twice was taken by ambulance to hospital where she was given intravenous fluids as her blood pressure was so low.

After I sent the email they moved very quickly and within 2 days she was transferred to a day patient facility 4 days before Xmas. She was given the option of that or full admission with a feeding tube. She comes home every night and is at home for the weekend.

We have had her there for 2 months now, and she will stay there until she is deemed safe. Which at the rate we are going is going to be a looooonng time.

During this time she has tried to discharge herself from CAMHS, which they told her if she goes ahead with that then she will be sectioned and moved to an in patient facility. It is the only threat that has worked to get her to eat.

We eventually found food that she could manage to eat, and if she has that for every meal then that is what we did.

DD calorie counts everything, Anorexia provides them with an in built calorie counter, if she is unsure of the calories then she doesn’t eat it. We are working on the basis that she has to have 1500 calories minimum to avoid a section. If we get 1700 in a day it’s been a good day……..they want 2000 a day in her, but that just isn’t possible at the moment. She is terrified of most foods that will help her gain weight, but will now eat ready meals for dinner, it has taken the pressure off all of us with preparing meals. She still refuses to speak to her psychiatrist, her dietician and her nurse, but they haven’t given up on her.

Her WFH is 71% now, it was 68% just before Xmas when she moved to the day patient unit.

We are no where near out of the woods, but her health has just about stabilised and is starting to improve. My relationship with her is rock bottom, I tell her every day that I love her and reassure her that I won’t give up on her. It has been the hardest three months of my life. I had cancer many years ago and a still born baby, anorexia trumps all of that.

I really hope the support you clearly need comes soon for you and her and hope that you can see from me sharing my crap that it sometimes has to hit rock bottom for something to give. X

@Dinnerisburnt just wanted to say I feel the same about anorexia, I could never have believed how hard going it is. Glad to hear your dd's health has stabilised. X

@summertimesadness24 I feel that we too were left to hit rock bottom before any meaningful intervention happened. I found the strain of waiting for her to collapse too much so we put together a private team and during that time she lost 3 kg in about a month. Once the weight started to come off we just could not stop it and even though she increased her intake she was unable to increase it sufficiently to actually stop the loss. We went to A&E a couple of times during that period as she had palpitations and she was given fluids. The doctors were quite good in that they did try to talk to her about the need to eat but they also said that A&E wasn’t the right place for her as it wasn’t really an A&E matter. Nevertheless, I’m glad I took her as they did bloods and ECG, which although off, were not immediately life threatening which was mildly reassuring and I knew that if needed they would have admitted her on the spot. And to be fair to them they did say to come back if anything changed for the worse. By this time the NHS ED services would have admitted her once a bed became available but we chose to stick with our private team. However, my DD is older and in adult services so our experience is bound to be different. But I can understand your anguish as you wait.
In your shoes, I wouldn’t think twice about going back to A&E. Better safe than sorry. The doctors there know that things can change very quickly for young people with EDs. X

Summertimesadness24

Wishing you a better day tomorrow. Please seek some help if dd doesn't eat x

Dinnerisburnt

It was so hard to read that so goodness knows how hard it must be to live through it. I'm so glad foods have been found that work for your dd and really hope she continues to get better and you can get closer again. She knows you love her and when she's well again she'll appreciate everything you've done and that you were there for her. When my dd was at a very low weight our relationship was awful and I truly thought we were broken forever. Dh got it worse, she would have nothing to do with him for months. Getting the weight back on is what really helped, although it has taken a long time, and we are in a better place now and I get lots of love you's and hugs- and appreciate every single one of them. Sending you a big hug xx

@BagpussSaggyOldClothCat thank you ❤️‍🩹 xx

@Dinnerisburnt I'm so sorry to read what you've been through, and are still going through. It's awful that so many of us have had to hit absolute rock bottom before we get the help we need. Sending strength your way, as you say it's a really long journey but it sounds as though you're on the rigjht path and getting her medically stable is an important milestone. We found as the weight went back on our DD has started to come back to us, things are still quite volatile but we see more and more of our girl as time goes on.

@summertimesadness24 my thoughts are with you too, it sounds as though you desperately need help. I think you need to be prepared to fight for more support at the clinic on Thursday, things can go downhill so fast. I honestly think your DD needs to be admitted.

Thank you - you raise some really good points and I'm sorry for your experience

I'll see how she goes today and update and will take her in should she refuse any just to be on the safe side

X

Poor boy. That sounds awful for him. A dip in blood sugar can cause a horrible shaky feeling & racing heart. Is he managing to eat his lunch and snacks at school? They use so much mental energy in school they really need a lot of cals - easier said than done I know x

Yes he is managing snack is supported by his teacher and I'm still popping in for lunches, school are taking over that after half term. He did have a different yoghurt yesterday (more cals) and he's wondering if the ed didn't want him to

Could well be the change of yogurt then. ED is so complex mentally. Its good he's open with you about it.

My dd didn't experience that sensation but she did get periods of disassociation which really scared her, she said she felt like she was there but not there. I think the brain does funny things when it's under a lot of stress plus is still recovering from malnourishment.

I hope you have a better day today summer. Don't worry about going to a&e, at the stage your dd is at she really needs daily obs, bloods and ecgs anyway as things can change very quickly in children.

Has anyone on here come out the otherside. What I would like to know is how long is this likely to be this hard? I was expecting two years , chams give the impression after a year she will be signed off as is normal and then it’s down to us. 9 months in don’t think I can imagine a lot of progress in three months. Still having daily arguments about food. Saying hates her snack taking ages to eat it. Going round in bloody circles. Seems we spend half the day talking about food it’s so bloody exhausting. I feel sorry for my other child who is younger and needs more attention. I want to know is there a time when you can just give them food and they eat it without any arguments? I can’t carry on like this for two more years it’s a miserable existence. Yes she is better physically she does eat the food after nagging and crying and comparing herself to everyone else. But also says she can’t wait to be an adult and then she won’t eat. What do they consider as being better, she can’t eat without worrying about it can’t go out with her friends can’t go for family meals. I feel bad writing this as I know others on this t thread are going through a hell of a lot worse and would love just for their child to eat fullstop. Sorry I’m just bloody tired.

Update: still on food strike
She is managing sips and bites quite literally and only because I'm standing over here

I feel I've tried EVERYTHING from love to tough love to swaps to literally anything to get her to eat but NOTHING is working

So I've called the clinic and they have an on call person I can talk to but they were in a meeting so waiting for call back

She is drinking as again I am literally making her - not that it's about me but I'm so exhausted. I have a toddler who's high energy and needs and I just feel broken

She will not eat no matter what I do

This has gone downhill from the weekend

Sorry this sounds so tough
I feel though any answers may be completely different to one situation to the next
I'm sorry you have been going through this for so long
I'm at the beginning but I've already accepted that this is the new norm and I'm just ( trying) to adjust life as best as I can

I've adapted work, me and husbands time together, time for my eldest with the ED and told my self I'll deal with it for as long as we need to

Also I've sort of kept life going
As wrong/right as it is - for me it's about keeping things ' normal ' and that's how I'm coping.

So evenings atm she isn't eating hardly anything so it's
' off to bed for rest darling, then I'll
Bring you a snack up shortly, love you' then hubby and I watch a film or catch up on our day and pop something on the tv

Then I'll pop up with last snack and milk and encourage her to drink/eat etc

It's about finding ways to cope and accepting this is life ' for now ' and I know your way in front of me but it's just how I have been dealing with it x

Whippetlovely

Dd has been ill for over two years, possibly nearer 3 as it was a long time before I realised. She was with camhs for one year before being discharged as she didn't engage.

The first year was a battle getting FBT established. Her weight was constantly up and down as she had many relapses. She shut herself away and self harmed and barely spoke to anyone. She was then prescribed anti depressants for suicidal thoughts (I found letters) and they seemed to do the trick within a couple of weeks with the anxiety around eating. Within a few months she was weight restored and has maintained since.

However, the mental effects of the time at low weight continue and she suffers with social anxiety, dysmorphia and depression. Anti depressants take the edge off and she's able to socialise occasionally and spends time with us again. She eats well without too much resistance but never any more than her meal plan. She wouldn't even eat one of my minstrels at the cinema yesterday.

She really needs therapy but resists. I think good therapy is probably be the key to full recovery and without it she will always at risk of relapse.

@Whippetlovely dd stayed with her illness during the first lockdown so April 2020. It wasn't bad at first but gradually she got worse and by the Christmas I was properly worried. It took until April to get any real support - we'd had dietician but she wasn't Ed trained and kept telling me not to worry.
In the April 2021 she was referred to the ED team and at the first appointment was admitted to ward. That was her lowest point. She stayed in for ten days but started to improve. She was able to return to school in July.
We never got anything from cahms due to waiting lists and the therapy offered by the nhs was shocking at first. It was directed at young children and dd was 16. We ended up paying for private therapy but it definitely helped a lot.
By the September dd was transformed and many anxieties had gone. Our relationship improved considerably.
She applied to universities but on the understanding that she could only go if she was well. By April 2022 she was at a high wfh.
I'd say it probably was about two years in total.
She's very happy in her second year at uni and healthier than ever.

Whippet I agree with pps that two years is realistic, the first year was hell and we were very much in the trenches of battling for every meal and snack. The second year was still hard but the battles around food had calmed down a bit, dd was still very up and down though and my mental health was also fragile.

We're nearly four years on now and things are mostly good, i think we have a new normal and it's good enough that I can accept it. Dd eats independently, she knows she has to eat breakfast, lunch and dinner with a couple of snacks. She can buy and prepare her own food and I only give low level supervision if needed.

Ime dd needed a year to get the weight back on and another year for the brain to catch up.

She hasn't had any meds or therapy so I'm not sure if that would have sped the process up a bit.

Hi all again. I keep writing a post then something comes up and I get distracted (I'm working as I don't get sick pay or paid parental leave and DH is home with DD).

Can anyone tell me their experience with regards to how long it took to go from Form 1 being submitted to the actual admission? We're very much on a knife edge here and CAMHS are going to and from the idea of hospital vs FBT.

@SicilianOrange I think it depends on bed availability. For us it was very quick, referral by CAMHS psychiatrist to psych ward was done on a Thursday. On the Saturday CAMHS sent us to A&E and she was admitted on medical grounds to a paediatric ward. She was there 3 nights to stabilise then across to the psych ward on the Tuesday. From what they had said to me on initial referral she would have been admitted to the psych ward within a few days even if she hadn't ended up on the paediatric ward first.

I hope you're bearing up OK, I've been thinking of you.

Ah thank you @GrannyRoberts that means a lot. It's been such a weird up and down few weeks with it tbh. Last Thursday we were geared up for them submitting the form, then our care co-ordinator said that because she's making tiny changes we would continue to do it at home but with support workers for meals and snacks, but ED specific support workers. The first one came on Friday, by Monday she said to DH that she didn't think we'd be able to do it at home because DD had refused afternoon milk while she was there. I know she's looking for other signs but it felt like a bit of a shock after DD had sat and eaten a homemade curry and various other meals in the days around that.
DD is utterly exhausted though, she's got just enough fight to fend off milk but nowhere near enough to fight the ED.

I honestly don't know what I want. I'm properly 50/50 on hospital vs home.

Interesting to read the posts about how long it takes to come out the other side though. Strapping in for a long old journey, but I'll do whatever it takes to get my brilliant DD back.

@SicilianOrange in my experience they really do try to keep children out of hospital if at all possible. So we also had CAMHS ED intervention at home but they saw very quickly that she needed a higher level of support. I also found that it was a couple of very specific and seemingly not that significant (in the grand scheme of things) things that seemed to trigger the referral. For us it was the right decision, but I was a little perplexed by the decision making process.

That’s interesting and a very similar experience actually. They must see things we don’t. We’re too entrenched I guess.

DD’s had an appointment today and they’ve submitted the form. She’s come out determined to fight but then when it comes down to sorting a dinner out she fights that instead.

Is there anything else for me to do as I feel like I'm living a nightmare ?

DD on a food strike since the weekend
Gradually getting worse and can barely get anything in her. Today all food refused apart from 2 items ( so on under 200k)

Called the clinic as was debating a&e but she has a clinic app tomorrow

They talked through some options which might include admitting her

I've told her today how important eating and drinking is! She doesn't get it
She just says she can't
No distress/screams/crying - seeming happy in her usual self dispute bed rest and no tv iPad phone etc

She did cry earlier saying she just can't
She tried
I've explained hospital won't be pleasant but nothing is going though

I know tomorrow is another day but now she's refusing it's just awful

@summertimesadness24

If she was my daughter I would be heading to A&E tonight.

My DD fainted and fell down the stairs when her intake was that low, an ambulance carted her off to hospital. Her heart rate was so low she was at risk of death.

Do you have any meal replacement shakes at home?