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

@Roui please go to A&E. It's so alarming that he is feeling heart arrhythmia on top of his already diagnosed long QT.
And he has restricted more and no doubt lost more weight.
His heart is struggling
Please take him to hospital.

Mild arrhythmia?!! I'm a nurse, there is no such thing, any arrhythmia is v dangerous. Drinking a litre of water with no food could really mess with his electrolytes which could push his heart even further.

3 plus 3 is a full time job, I remember being where you are now and that slow realisation that I couldn't work and ensure dd ate all the meals and snacks.

Once your Ds is medically stable (he needs a full medical check at a&e) then to establish 3 meals and 3 snacks you will need to be signed off work. Your Ds is absolutely too unwell to be at college.

Did the clinic work out his wfh?

I’ve been reading this thread for a while as am going through this with my 13 year old daughter. Just wanted to say that the day I took her to hospital for tests after her first camhs appointment, I had the conversation with her in the car that she may not be able to come home with me. It was awful and we were both terrified but she was very ill. You wouldn’t have known it though. She was still going to school and playing sports she loves right up until that moment. Hospital did let her home but she was essentially on complete bed rest and we started the 3+3. This was at start of summer holidays and she was 78% wfh. She is now 95% wfh. They tell us we caught it quite early but it doesn’t feel
like it and I constantly feel like I let her down when she needed me the most.

I feel like I grieve everyday for life before this. I worry about our relationship and the effect on her younger sister. I don’t really sleep and pretending to most of the world that everything is okay is exhausting!! (Few close friends and family know) BUT she is so much happier and healthier. There’s still much to do.

To anyone suspecting that something is going on don’t delay in getting help. They need you to take control of it as they are physically and mentally unable to no matter how hard they may want to.

Not sure why I have chosen today to type and I’m sorry I’m not thanking people individually for your comments or advice but just checking in here every now and again has helped so thank you.

Hi lazzaroo

I totally understand how you feel. Getting them to near weight restoration brings some relief that they're physically well, but it's not the end of the journey and there are still many mental issues to navigate. I'm in that situation with my dd. She's a lot happier and our relationship is mending and she appears 'normal' to the outside world but she still eats to strict routine and has many fear foods and it feels like she could slip back any minute unless I'm constantly vigilant. ED is incredibly sneaky so I'm paranoid about everything. It's not a comfortable way to live day to day not being able to relax and it affects my health, my sleep, my relationships, work. No one quite gets it like other parents going through the same thing.

I'm glad the thread has been a help to you and I wish you and your dd well in her continuing recovery xx

Roui

I'm so sorry things are so bad with your ds. I agree with the others that it sounds like he needs urgent care. They can become very poorly very quickly. Sending you love and support xx

Thank you for your continued support.

So DS is not considered underweight at all, Infact his WFH is actually 120% but when looking at photos from last year to this year you can see a huge difference.

For him he is terrified of putting on weight, he just wants to be skinny. But I feel Cahms are out of order saying "yeah he wants to be skinny, but he's not said he wants his bones sticking out!" He said he wanted to be like his older brother who is naturally very very slim and always has been (his bones do stick out!)

He's really a foodie - loves to eat so this is torture seeing what he is doing to himself.

Today he has been really pale, feeling dizzy when he stands up (I am refusing to let him go to his youth club tonight and I have told him no college next week if he doesn't eat). He's wearing my smart watch and his heart rate has shot up to 122 when he has got up. He says he feels really weak and dizzy.

I took the day off work parental leave and i have been with him all day and he has managed a little bit of food and some Dr Pepper. But I fear this is what I am going to have to do for a bit... literally, keep him with me and gently encourage him to eat. We are using the little and often approach to bringing food back in, which I think he can cope better with. We have also talked about his body image and staying healthy. It feels like its working today, but who knows.

I did call the GP, who has prescribed some Iron as its Ferritin is low. I also got a copy of his bloods from the 20th October. She said she can't do anything about the ECG prolonged QT yet until CAHMS share it! I feel really let down by professionals right now.

I phoned the Community ED team at CAHMS, no answer so left a voicemail. Hopefully someone will call soon.

I feel like a fraud. I feel like I am overreacting. I feel like I am in denial at the same time, like he will eat something and I think it's sorted he's eating again, and then the next day we have the same issues. I barely slept last night because I was frightened something would happen to him!

@roui you just need to take him to a&e. a WFH of 120% doesn't mean he is safe. the arrythmia and prolonged QT phase will be due to electrolyte imbalances due to his starving. The iron tablets from the GP are really not what you need right now. I know it is all overwhelming but I do think you complety underestimate how dangerous this is. If you do not drive, call 111. We had an ambulance send out and where bluelighted to hospital as their observations (including a prolonged QT phase) were abnormal.

120% wfh doesn't mean he isn't at risk..if he was always a high percentile for weight and an average height his natural wfh should be higher. 100%wfh just means 50th percentile for BMI for his height. So if he is naturally heavier 120% wfh could be underweight for him.
In any event as @Curlyhairedassasin says his fasting is the issue at the moment. Regardless of his absolute weight.
Eating less than 500 cals a day for a prolonged period is very dangerous. Esp for growing and developing teens.

A different nurse from ED team called. I explained how worried I was about him and how weak he is compared to Monday. She has agreed to have him in on Monday at 8am to re do the physical tests. But also said if he gets any worse to call 111.

She said not that we would tell DS but actually he’s a little over weight with the 120% but I clearly told her that if you compare what he looks like last year to this year in photos there is a big change in his weight.

I also said I wasn’t having it that this was due to him previously having had some MH and social difficulties. His life is a hell of a lot better in all areas, he’s not anxious about his life changing as he feels safe and secure and happy and this is purely body image and him being desperate to be thin and stay thin.

I at least feel a little more listened to and I am preparing to go into battle on Monday morning when they review the decision.

Jeez a person can have AN and be 'overweight' the absolute weight is not the issue. It the rapid losses, restricting food and fluid and the associated behaviours.
It staggers me that so called professionals don't get this.
No child should lose weight except under medical supervision. Would she suggest someone 'loses' weight by restricting to 500 or less cals a day...even an adult. Its dangerous.
It makes me mad on your behalf. Everything you have told us about his behaviour, eating and feelings suggest AN.
I also think the professionals still don't seem to think this can be a male issue. Just my observation and totally anecdotal... but mothers of DS do seem to struggle to get their concerns taken seriously, even more than those with DD and they struggle enough....

But I am glad you have an appointment at least.

It's the rapid weight loss that is the concern, it was listed on our 'referrals' urgent criteria, so not just overall weight and that's how my dd first came into ED services. Unfortunately once the an behaviours have taken control, she then did become very underweight, so the idea they will just engage in this extreme behaviour and then back magically out of it once they hit the right BMI is wrong, absolutely wrong.

We have been on a different journey than most here, it started later (age 16) and we are now in adult services, although my dd is definitely recovering. We did not do the textbook things, in fact, things like taking control of my dd's eating pushed her to more extreme behaviours, and neither myself or the hospital admissions had much effect on that, and ultimately it was pushing her to unsafe behaviours that were worse than allowing her some control. It took the ED clinic a long time to realise she didn't have classic AN at all and in fact was prepared to do a huge variety of things to meet her goal, some of which were dangerous and extreme. I'm happy now she has some control over her own intake and is motivated to keep well to keep in college/socialising because now she's over 18, our options in terms of restricting her in where she goes, what she does and what she eats are basically impossible, she can live outside the home, and for adults the criteria for intervention with ED is much much higher (because adults are deemed to have consent, even to starve themselves to death, as a recent case has shown), so I appreciate the team pushing forward with intervention when she was younger as that's when its possible.

I think it is an ongoing issue for us, although she appears on the surface to eat quite freely sometimes, and not at others, but bulimia is not the same as anorexia and requires quite a different approach, which I don't know if the NHS services or the family therapy refeeding programmes are set up for at all, in fact, in our case, they worsened the situation before we found a way through (or rather she did, I'm not sure we did much rather than be very very supportive of her as a person).

Hi everyone, @Roui hope the weekend is ok and the appointment on Monday brings you the right care.

I really want to reply to lots of you but my head has limited space but I'm reading all your posts, really grateful for your expertise and just having people who get it.

I really need some advice around getting school on board with supervised lunches. I'm coming to the realisation that DD can't manage unsupervised lunches at school. She put on loads of weight last week (after an alarming dip) but this week has just maintained. So she's obviously not eating enough at school. We've got a letter from CAMHS explaining but it's hard to even get hold of her head of year. Every email has to go through the (evil witch) receptionist.

I just can't imagine there being a member of staff who can consistently supervise. I can't see DD going willingly, they'll have to meet her at her classroom every day. She'll run rings around them.

I would happily take a few weeks off and supervise but she won't come out.

We will have consequences - no social life, then no school, then no phone. It will be hell but we will do it.

Any advice or just to hear how you managed supervised lunches in the face of resistance would be helpful.

@Roui your son's mental processes definitely sound driven by an ED. It's so frustrating that some health care workers get stuck on weight as the key factor rather than it's rapid loss and mindset.
@Eyelashesoffire from what I understand supervision will just equal a person on the room. My DD's school would not offer this so DH and I would run down in between clients to sit outside and supervise. She is now eating independently at school (as far as we can be sure...)

Have been at the ED clinic this afternoon and first session in forever where DD hasn't just sulked and ignored therapist...could she finally be willing to engage??? I know it's dangerous to hope w this illness but....
Also my heart was so warmed when I saw a girl at the clinic who was around at similar time to DD starting treatment. Honestly I almost cried to see her in her school uniform ( v obviously unwell and unable to attend when we saw her pre Summer) She's doing so well, we chatted and she's doing her meal plan and enjoying social stuff again(I was waiting for DH and DD to meet me at the clinic) She knows she still got stuff to do but when I saw her before she was clearly in denial.Just a lovely young lady. DH almost cried when I told him about our meeting (she had already gone in when he arrived)Brings back those terrible first weeks but also so beautiful how far she and my DD have come since then

@Eyelashesoffire

DD is at secondary and we made it a condition that she accepts meal support in order to return to school (she was out of school for a while and then only part time). Our ED team contacted school to arrange a meeting. DD is now eating in the staff room. there is a rota of staff who are with her. she can take a friend along. She only has snack and lunch in school so it's not a very onerous task to supervise those meals esp as there is always staff in the staff room. We are lucky though that school is on the ball. Seems it's not standard from reading on here

Thanks @ReineDeSaba and @Curlyhairedassasin

did your DDs just go to the staff room /come out on their own to be supervised? I just can't imagine it with DD. She'll need to experience the consequences (i.e. no school) I think.

I've got a question about calories. I'd say with lunch she's getting around 2.200 calories a day, when she was putting on weight that's what she had.

Is 2200 roughly what you're all doing? No-one has really talked calories with us. We're not allowed to see the ED dietitian because we know her. We've seen a community dietitian but we didn't talk calories. DD does very little exercise, we don't let her walk much, always a lift.
I'm exhausted.

@Eyelashesoffire at my dd school they have a support room called the bridge which is supervised all day. When dd first went back to school she did her lessons in that room and they supervised her morning snack. She had lunch in the car with me. I had to collect her from reception. After a few weeks she started to have her lunch in that room. Gradually she started going to more of her lessons but would have snack and lunch in the support room. She then had snack with friends and now she is eating lunch with friends but teachers keep a close eye on her. It has taken about 4 months to gradually get her eating with friends again. She still has the option to go to the support room if she feels she needs to and is allowed to take a friend. School have been fantastic. They have a pastoral team for each year group. At the start we were having fortnightly meetings so they new how best to support dd.

@Eyelashesoffire

staff get her, I think. she wants to stay on school so is playing ball. we had occasions though where she binned the lunch box food on the way to school. Initially, I was driving the food to school to bypass that issue. But she is taking the lunch box now herself.

she has about 2200 cals but is only maintaining (she is on 90-91% WFH). We currently struggle massively with her to increase it. What one needs is very individual. some may gain on that intake, others don't. No sport but she walks to school as I cannot drive her due to logistics.

@Eyelashesoffire my DD is in 6th form so she can come and go as she pleases and not so awkward I guess to explain to others. The school has been quite disappointing. I know individual teachers have been very kind but we had a parents' evening the other day w DD and one of the teachers said 'she just needs to figure out how to get that extra mark' when she got 9/10 for something.Er no, her AN has come from her drive for perfection. With regards to cal intake she does loads more socially and so is more physically busy and so now she is flattening out w weight gain which is ok for where she is ( 100)In the beginning I thought any increase would drive her weight up as she was literally starving but I think we had to get to over 2500 to achieve this(though we dont do calories)

The rule of thumb is 500 kcal a day over the base they need to maintain to add 0.5kg in that week.
So 2200 will prob not see weight gain.
The average adult woman needs c 2000 kcals a day. And it's why historically 1500 a day was a 'diet' to lose weight slowly and steadily
Clearly no one is average and teens generally have a higher cal need than women to fuel growth, brain development and puberty. But similarly if she does literally no activity that will reduce need (but only slightly, exercise doesn't use as many cals as people generally estimate)
School work is quite cal intensive too.
So we aimed for 2500 a day and added more as my DD was active and needed to go through puberty. So 3000 plus. She gained between. 0.5kg and 1kg a week on average but it was not linear. She would eat the same stuff and do the same activity over 2 weeks and gain in one and maintain in another. Which was always demoralising.

She still eats about 2800 and is maintaining, but she is v active.
And when I say she ate 3000 plus, it took us weeks to build up to that. And I hid cals. No regret there.

Sorry I mean when we don't do calories we dont weigh form...I'm just guessing...my guess is that now maintaining as a busy but not exercising teen she has 2500 but was at 3000 before. I hid extra calories before (ED units get a bit funny about this as obviously if child finds out while you are doing it...)and also v glad. I've just taken that away for v slow gain/maintenance stage

It’s really hard to figure out calories (also I can get a bit fixated so trying not to do that). We had a bad day yesterday, she tends to eat half of what she’s given…

banana and peanut butter smoothie with half cream and milk (drank half)
niknaks (? At school)
pot ramen thing (ate all)
hot chocolate with cream (half)
chicken burger and waffles with boiled veg (ate)

at bedtime I found a note saying she feels shaky, weak, head spinning, but she was already asleep so I couldn’t get anything else in her. She declines biscuits/snack foods and if I’m not 100% focussed on her she slips through my net - I work 4 days a week, have an overnight on call, another child, housework and a parent newly diagnosed with dementia, so needing a lot of input. How do we all do this? :(

@Glitterfarti does she have an issue w liquids. Just noticing those are what she had half of. My DD would not drink water way way back and was getting so dehydrated. I think because she feared feeling full and then was suspicious of drinks as a quick way to get in calories.
You have a huge amount to deal with right now, I don't have fix it answers around coping I'm afraid. Some days it feels impossible to me and others less impossible but it certainly feels more survive than thrive for us a lot of the time. I literally take a few physical deep breaths to try to stay regulated (box breathing) but finding time for myself inbetween work and this is tough. I have a great book on the go right now which makes me happy

@ReineDeSaba she doesn’t drink a lot. She used to like Fanta but she’s copped on to me buying full fat so now asks for Pepsi max. She normally likes smoothies etc more than solid food hence I let her have smoothie for breakfast but she’d prefer berries and juice and I suspect has realised there’s cream going in there.

Thank you for your insight, good to connect here and know it’s not just us going through it!