Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

Agreed. We were told after being discharged that 48 hours "hunger strike" (200 cals per less) means a trip to A&E or 24 hours if no fluids either.

Also the NG tube can be a good thing if it gets them re fed. It's surprising what a difference in their calorie intake does to their mood.

If she’s only eating 100 calories a day I’d take her to a&e and refuse to take her home.

It’s a life threatening level of food restriction and teens compensate physically until they can’t anymore….

@Mummyoflittledragon I’m having similar conversations with my dd, I think she’s in complete denial about going to uni tbh.

I’ve decided to back off for now, I’m wondering if it will be possible for me to do an online food shop for her once a week when she’s in halls 🤔 She won’t have a car so doing a biggish shop will be hard anyway.

I totally agree with @Girliefriendlikespuppies any medical professional sending her home on the equivalent of. Packet of crisps a day is crazy. Their hersr rate etc can be fine one minute. It’s not fair on you @10YellowTulips to be responsible for someone so poorly. Is she not underweight so they won’t help? I would still take her even though you have even before, as you don’t know her obs are still ok and you should follow the guidelines

No she is underweight I think she’s around 85% wfh.
I think they are struggling for capacity on the ward which is maybe why they haven’t admitted her previously - as I said Ed team know how little she eats. However I’d be surprised if they don’t start making a plan to do it on Wednesday - if they don’t I will take her a&e and refuse to leave as suggested

@Girliefriendlikespuppies
My dd won’t have her car either. I can see why you are able to back off Girlie. Your dd can go away alone and feed herself. Mine cannot do this and wouldn’t accept any sort of help like this. Ergo I don’t feel as though I can back off. I can see her reaction ‘that’s weird’, ‘no one else’s parents do that, ‘you’re so controlling’ etc.

As for online shops, I have googled already. It seems like it is a possibility, however, your dd would need to be there to receive the food. And be able to easily take the food. The best for this would be a supermarket, which delivers with bags, such as Ocado. And she can return them for recycling.

Idk what my dd would do. Maybe get an Uber or something. It’s so hard.

I have a 15 year old son who is on a waiting list with camhs for potential eating disorder. He is also hitting his jaw and face due to thinking it will help its shape. He has delayed puberty which may or not be relevant.
He has restrict his food so much over the last few months and he is now underweight but believes he is fat. I’m really worried about him.
He’s been referred to camhs for potential ocd and body dysmorphia but there is a huge waiting list and I don’t know what to do in the mean time
mhad

he has bruises all over his face today due to bone smashing and said he will not stop because I don’t understand. He’s also eaten nothing not strawberries.

I just wondered if there was anyone with experience of this that could relate or advise.

@Blueberry2026
I am so sorry to read about your ds. This sounds very scary for both of you. Your ds sounds very mentally unwell. To be seen earlier, I would have thought he could have been offered an urgent referral to the ED clinic if eating so little.

From what you say, I presume your ds ate less than 500 calories yesterday. What about previous days. As we have been discussing wjfh 10YellowTulips, eating fewer than 500 calories in a day is a medical emergency. Doing this in 2 consecutive days triggers that.

As for hitting himself, this is a form of self harm. Some parents on here have experience of this alongside the ED. I don’t personally. But I really would consider taking him to hospital and see what they say. He sounds very poorly. Poor lad.

@10YellowTulips
I don’t understand why they haven’t admitted your dd to a general children’s ward. Knowing everything I know now about eating disorders, I would still go to A&E personally. They shouldn’t be expecting you to cope like this due to having no beds in ED.

@Blueberry2026 I second what @Mummyoflittledragon says, your son sounds very ill. Has he been referred to the eating disorder service? Has the GP checked his bloods, done an ecg, checked his physical observations?

I would physically restrain him from hitting his face, who else is at home with you? If he’s eating less than 500 calories a day go to A&e.

@Blueberry2026 I'm so sorry you're joining us here. Your son sounds very unwell. @Mummyoflittledragon is right about him needing a & e if he's eating less than 500 calories a day. If he's managing more than that it still sounds like he really can't wait to be seen . You shouldn't have to do this but I would keep calling them, tell them that he's worsening, specifically focus on how little he's eating and his weight being very low.

My DD self harms and I've found CAMHs to be pretty nonchalant about it. It's so incredibly upsetting for us as parents though isn't it? I try and spend as much time with her and keep her busy if she'll allow me, if she's refusing to leave her room then I'm in and out all the time to try and make sure she's safe.

I'm so sorry that you're not getting the help you so clearly need though. Same for you @10YellowTulips You should both be getting far more urgent help and support.

@Mummyoflittledragon my dd still needs a lot of support at home, I still do 99% of the food shopping and cooking, she still needs prompting to eat enough. She managed in Australia by copying the other girls on the trip. Today for example she’s gone off to work with a pre-made breakfast and lunch I made her last night, she just wouldn’t do it herself.

By back off I mean I’ll wait until nearer the time to have these conversations with her again, currently she just doesn’t engage in them at all. I did mention doing an online shop for her and she didn’t say no so I’ll take that as a yes 😉 I’ve not used Ocado before but I’ll look into it, thanks.

I’m sorry to was about your son. @Blueberry2026. It sounds like he has been referred to general cahms not the eating disorder service - he might need the general cahms too but you should go back to the GP and ask for a referral to the eating disorder service. It should be an urgent 2 week referral as eating disorders are an emergency.
in the meantime I would take him to a&e to be checked over. They might also be able to contact the eating disorder service service for you. How long has your son been eating like this?

@Blueberry2026 I had to specifically ask my GP to be referred to the eating disorder service in my area.
Luckily I was told the name of the service by someone at my daughter's school so I could literally ask for referral to that very service. They're supposed to see you within a very tight time frame. Maybe a couple of weeks max.
Another option is A&E who will get you assessed by the on call emergency mental health team.
Good luck and I'm sorry you're going through this.

I don't know if anyone else saw the request for experiences of NG feeds via Jenny Langley? I only very recently realised that for EDs they tend to insert and remove the tube at each feed. No wonder it is traumatic.

In non ED paeds 100% the tube stays in all the time and the feed is run overnight. It can be done at home too. There is a study right now looking at improving practice in EDU. If anyone has a DC who is being NG fed with daily insertion/removal it might be useful to know.

@Blueberry2026 sorry you have had to join us. My DC self harms routinely, it is very hard to get help for this but I would definitely express it in those terms. Thinking of you

@Girliefriendlikespuppies
Ah I see. I thought your dd was more autonomous than that. So it’s also a big worry. My dd likewise doesn’t really make herself food either. She will do herself a lunch of dry bread, pre sliced cheese and crisps. This is also one to tackle. So much to do.

My dd also did ok on her holiday abroad by copying the others. That meant not eating to meal plan. Then when she tried to replicate it at home and only eating 4 times a day, she failed. I stepped in after a couple of weeks to pull her back from the start of relapse.

As for supermarkets, I think the others have switched to crates, which means students need bags at the ready to unpack. Ocado is a bit more expensive as they seem to have a more limited range of own brand, but they do a price promise and deliver M&S if you want a little luxury.

God, that does sound traumatic @unbuckle

It does feel sometimes like there is a deliberately punitive element to ed treatment. It makes me very uneasy as I don't think it helps recovery at all.

That's interesting. The tube we had in paeds ward was in all the time. It would be very traumatic to constantly have in inserted and removed and I can't imagine they'd get consent each time either! They only managed to insert the one for us because she had literally no energy left to argue.
It does seem that repeated insertion would be purely for punishment for not eating rather than nutrition. That just makes it more into a battle surely.

I have never known them keep removing the ED tube. I do know that even when inserted food is always offered and the ED tube is still the last resort even when inserted.

I do believe ED services are fundamentally broken and like much of the NHS have become underfunded and unfit for purpose. I also believe that as shown in here, it is the families that get their children back over and over xx

I am really glad to hear of experiences, I was horrified to read that insertion each time is even an option

I heard on one of the fb pages that the feeding tube was taken in anc out each time, I think so that each meal would be eaten to avoid the trauma of having the tube put back in. Pretty grim way of doing it.

My DD caught on to the fact that the fortisip they put down the tube is more calories than the meal she is offered and that was enough of a "punishment" to get her to eat (most of the time). If she leaves even part of her meal, the full meals worth is put in the tube.

Im still of the opinion that they will recover when they choose and want to recover. And getting to that point is the difficult part! I don't think punishment is the right way for us, but it has kept her out of medical danger in the interim.

I hate this illness!!!!

That is a grim way of doing it. These kids are unwell they don't have a behaviour problem that deserves punishment.

I've obviously had my reservations with some of the approaches our ed team have taken but I will say that they take good physical care of DD. We are seen very regularly and I can't imagine them just leaving her on dangerously low calories as some young people on here have been. It's heartbreaking and absolutely not good enough.

I suppose the issue is they can’t chose to recover if they’re in a state of starvation. It’s similar to someone with psychosis being forced to take their meds. There are similarities between anorexia and psychosis sufferers imo, both are brain based, they both believe things that aren’t true even in the face of overwhelming evidence, they both can hear voices (generally telling them horrible things about themselves) and with both the sufferer doesn’t tend to accept they’re unwell.

The other factor to remember is that the child has convinced their brain that food is dangerous. The brain is very literal and so when you avoid anything it believes you are protecting it so when faced with that danger it chucks everything it can at it to make it go away (fear, disgust, anger, guilt etc.)

The only way to reprogram the brain is to consistently eat the food.

So while I agree the approach of NG tubes does seem cruel I can also see that for some kids it’s absolutely lifesaving and could be their turning point.

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Oh absolutely, it's not the use of Ng tubes. I agree those are vital. It's deliberately employing a method where you insert it and take it out at meal times rather than leave it in place to make it more traumatic so they'll eat their meal.

It sounds from the accounts on here that might be rare though, I certainly hope it is.

I think that inpatient units prefer the in and out of NG. That’s our experience anyway. With a medical paeds admission leaving it in. My daughter now would categorically not leave a tube in anyway so the daily use is needed and even then under restraint. Some would also be able to the tube to self harm I guess and also remove the feed. Some positives we have seen would be the extreme food distress is once a day with this method which leaves some time to try and feel calm and do other distractions. Also the staff must hate it too so the meal support my daughter has had has been amazing as they try to add in oral food. Horrendous either way really but prob varies across medical admissions v psychiatric longer stays maybe.