Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

Yeah, I don’t understand why we don’t have a diagnosis. The diagnostic criteria make it seem simple but perhaps it’s more complex in reality.
DS had a pre-existing diagnosis of depression, anxiety and of course autism, I think one theory is his low intake is an extension of that. Certainly, at our last meeting the main discussion was around treating DS depression.

I think what is not understood is the motivation behind DS not eating as he doesn’t ever articulate his thoughts. There have been discussions on occasion around issues with body image but then he will also make statements that contradict that. 90% of the time he doesn’t talk and when he does talk he tends to just say what he thinks the person he is talking to wants to hear.

I’m very frustrated. I don’t know how to help DS and professionals don’t seem to want to bother helping him. It feels like ‘capacity’ is being used as an excuse to not have to actually do anything. If DS chooses not to engage that’s up to him.

We had a tiny weight gain last week and now we don’t have another meeting until the end of the month.

@WoodenTrain DD has a dx of depression, anxiety and has been referred for an Asd assessment. It never stood in the way of an AN diagnosis.

Your DS sounds very similar to DD. She doesn't engage with anyone neither anymore. No idea really what is going on underneath. It's just so incredibly frustrating. At times, it feels like she is sabotaging all attempts by various teams to help her by her complete refusal to engage in any meaningful way. I am so worn down by it.

@Curlyhairedassasin
I appreciate that you’ve been dealing with this a long time. Reading back my 2am insomnia post i can see how that post came across. I just did a search and came up with this discussion about gagging on FEAST https://www.aroundthedinnertable.org/post/does-the-gagging-and-nausea-of-refeeding-ever-end-10366991

In my experience it is trying to ascertain whether this is anxiety primarily, disordered eating or an eating disorder. It is outrageous that a lack of diagnosis is being used as an excuse not to treat seriously ill children.

My dd also didn’t participate much in discussions. She was confused as to why she was even at CAMHS. Then as soon as she was eating and had put on a tiny amount, dd went with an agenda of intimidating the psychiatrist. Rather than realising dd has anosognosia, the psychiatrist treated her like a sparring partner and told her she doesn’t have an ED. I was doing most of the talking at the parental debrief and looking at the psychiatrist. Dh said apparently the nurse was rolling her eyes at the psychiatrist.

Ultimately the cause doesn’t matter imo. It is important to just get them to eat. If they’re too anxious, like my dd to engage in therapy, the anxiety will improve once they are nutritionally replete, and they may at that stage be able to engage. Or perhaps they never will. But the process and caring for them to get back to health can be very healing, I imagine, and perhaps enough.

Good evening all,

I've been reading along and need to do a proper post with an update on my DS but wanted to ask you very wise people a quick question if that's ok? We were advised to apply for DLA last year and was successful. It's not due for renewal till early 2025 but I wondered if anyone had any experience? Should I contact DLA to reapply? How much in advance? Will I be contacted?

Many thanks in advance and sending hugs to each and every one of you x

@Tooglamtogiveadamn2 my older child has been on DLA so I am a bit of an expert. Before the award runs out (4-5 months usually) you should get the 'renewal form. It's called renewal but in essence, you are making a new claim. Treat it like you applied for the first time. copy stuff from the first application if no change (don't write 'no change'), resend evidence. My understanding is that they don't look at the old claim. With it already being November, and your claim running out early 2025 I would ring them on Monday to request the form. You really should have had it

Things have turned worse over the last few days. We've stopped giving dd the choice of what she eats, which has caused a dramatic drop in her intake. Yesterday she only had a bit of lunch and a sandwich later on. Today nothing as I told her yoghurt and apples was not an option for breakfast.
There is so much rage and anger. Yesterday she was hitting and kicking me repeatedly, saying we're making everything worse and she doesn't want us to love her. If she's not raging at us then she's ignoring us totally.

I checked her search history and shes been searching how many paracetamol to take, how deep to cut etc.

I feel like this is doing more harm than good, does this get easier? How do we get her to eat when she has such resolve not to have anything we give her? This feels like we're heading into crisis again and I don't know how to turn things around.

Icy, i’m so sorry to read this and it must be incredibly painful for everyone. This approach never worked for our daughter and we had to go to a treatment unit for intensive therapy in order to turn things around. And even then progress was slow, but it was steady and continues in that manner.
Please bear in mind though that our circumstances may have been very different to yours and our daughter was already in her late teens and we therefore could not use FBT as if she were 15.

@IcySloth
I have not been able to control what my dd eats.

Yoghurt and apple isn’t ideal as there isn’t any carb. But food is food and the yoghurt is protein and fat - unless fat free.

My dd ate humous, carrot sticks and grapes every day for months interspersed with about one day a week of eating tortilla chips and sour cream and chive dip when she went to the cinema or to the park with friends. The rule was one meal, nothing before 8pm. Luckily the one meal was relatively nutrient rich and had carb, fat and protein albeit it in small quantities. From that with the help of an ED coach, we have managed to get her to eat 3 meals, 3 snacks.

Dd eats the same thing every day. This makes her feel safe and able to eat. The only thing I have been able to insist is that her lunch is a bought egg sandwich every day with crisps (she would have bought cheese and fruit) as she will only eat tiny quantities of cheese at home, no other protein.

Her diet isn’t ideal. But she’s eating and very very slowly putting on weight. I would love dd to eat yoghurt. My experience of trying to force dd to eat certain foods is the same as yours. Refusal and violence. She likely has autism and PDA so eating what she doesn’t want to eat is too overwhelming.

@IcySloth I would discuss the search history with the team tomorrow. You may need a safety plan which sets our measures how to keep her safe. DD is self harming and recently overdosed. She didn't share her plans to overdose with us. We now have a safely plan which involves 24/7 supervision at all times and no access to meds and sharp objects. Make sure you have locked all sharp things at home locked away. We bought a lock box from Amazon with a number lock to keep knifes, scissors etc at hand in the kitchen. Same for medication. Make sure nothing is in her reach.

If she is eating under 500 cals for a few days, I would take her to a&e.

fwiw, DD is eating the same foods every day. she gets aggressive and violent when we want to push food and is eating nothing then. FBT is not working for us (but she is eating enough to maintain a 83-84%WFH). So don't have any practical advice how to get her to eat as we have failed on that front. I guess I just want to say you aren't alone. But please take her search history seriously and take steps to minimise the risk for harm.

You are doing the right thing however you need to have a back up plan for when the food doesn't go in.

I would put the food in front of her with the expectation she eats it, give her 45 mins to an hour and if it's not eaten explain you're taking her to a&e.

I would plate the food up, put her in the car and drive to a&e. Ideally she'll start eating in the way but if not see it through and get all the physical checks.

Do not leave a&e until she's eaten everything you gave her.

It might be she needs admission to get the refeeding on track.

I think without seeing it through you end up in a situation where they are still controlling what they eat so don't ever gain the weight they need to start recovering. It's like making a deal with the devil.

That said if she'll go for Greek yogurt what about a smoothie? This could be made with fruit, oats, nut butters and double cream so a really high calorie hit.

Hi All, 14 yo DD has been diagnosed with anorexia, saw CAHMS last week, on the waiting list for FBT. This has hit us like a truck although obviously I knew there was an issue, but we will work through it and I'm reading your threads and other resources to get all the info I can.

One thing that I can't get out of my head (maybe Mum guilt?) is that CAHMS said DD was underweight, however I don't understand what metrics they use for this as when I look at the adolescent BMI calculator it shows her at the 27th percentile, she is 5'2 and weighs 7 stone 2lbs. Can anyone shed any light please?

@HollyBollyBooBoo sorry you find yourself here. We are doing FBT so I’ll share a few key pointers to get you started.

The aim is 3 meals and 3 snacks a day.your DD must get absolutely NO input into what they eat or don’t eat. The only exception is stuff they’ve not eaten pre ED. Bear in mind that disordered eating may have been present for a considerable length of time before the ED took hold so stuff they have previously enjoyed and decided they don’t like in the last year or so should still be given. Keep them out of the kitchen and plate up everything for them. You also need to supervise them for at least 30 minutes if not an hour after meals in case of purging. The ED is beyond manipulative. DD would try and spit food out or hide it in Tupperware. If you have dogs keep them away from the dinner table too .Even if they have never purged before the ED gets desperate.
I found it really beneficial having an eating plan from a dietician( which isn’t exactly in line with FBT which states that a parent is best placed to renourush and feed the child). however for DD I think having this plan was like a prescription for DD and gave her permission to follow it as it came from a professional.

sorry I can’t help with the WFH but hopefully someone more knowledgeable with that will be along to help in that regard.

Thank you, really helpful x

That is what they said at the end of the session but it felt like information overload whilst DD was beside herself crying so it is hard to remember everything.

@HollyBollyBooBoo yep, there is information overload coupled with the shock of a diagnosis. It’s utterly brutal. Dd was diagnosed at the end of last year so that is us a year into this minefield.

The mum guilt is brutal. DD has blamed me for so much. One key thing and it’s much easier said than done but try and separate the behaviour(ED) from the person. The ED will make them behave and respond in ways you never thought possible.

@HollyBollyBooBooSorry you find yourself here. Check out Eva Musby's YouTube channel and books for how to support your DD during FBT. Beat website also very good - and is this thread! I don't know about the weight for heigh, but if you have caught this before your DD has serious (physical) health consequences, then that's good news. Best wishes x

Hi @HollyBollyBooBoo I've calculated your DD's rough weight-for-height percentile to be 94 (as you didn't give her date of birth). That means she is 94% of the average weight of other girls her age and height, so you can see where CAMHS is coming from. This may be a healthy weight for some girls, but for others it would stop their body from functioning properly. It depends on where your DD has sat weight-wise in the past. If she is naturally say 110% WFH then 94% would be unhealthy for her. Hope that makes sense.

So, took DD to the GP, she’s 78%, 1st centile. He agrees another referral to ED service is futile, but not sure what to do instead. He is referring to Dietician, but don’t know how long that will take. Apparently her BP is high, which he said was anxiety but I’m not so sure - would ED make it low (that’s what I’d expect but if her heart is strained it’s going to go up, right?)

I would expect low BP with starvation but I guess it would depend on overall physical health. @Glitterfarti I would see an ED psychiatrist for advice and observations as I think you need more specialised help than a GP or dietitian can offer.

@Glitterfarti can only talk for DD when her weight came crashing down and everything was low in her case. Heart rate, blood pressure, and body temp. Cannot remember the blood pressure but was too low to record a reading on the home machine. paramedics checked it old skool stethoscope and counting heart rate (or however that works). do you have a machine at home to double check at home? 78%wfh is low. did you have other checks like bloods and ECG?

@Glitterfarti Could you take her to A&E if she is eating under 500 cals per day? What are her other obs, e.g temperature, like? Our DD's BP was slightly high when she was at her worst (nothing to eat for 5 days). This was the only reason we didn't call an ambulance when she refused to go to A&E - usually she was admitted for low BP, so we thought that slightly elevated was a good sign, and the CAMHs emergency line seemed to agree. When we finally got her to hospital they really told.us off for not calling an ambulance, and said high BP was a sign her body was struggling. Don't mean to worry you, but things can go downhill quickly and the worst they can do is send you home.

Thanks @Curlyhairedassasin @NanFlanders @Shanghai101 , I don’t have a paediatric BP cuff, and her arm is like a piece of string so adult ones won’t be accurate, she feels cold but ear thermometer has been normal. I don’t know normal paediatric values though - he only did BP because I specifically asked for it, no other clinical obs apart from height and weight. Were keeping her in school for now (I know this is agains ED team advice but GP says if they won’t diagnose her we don’t have to adhere to their guidance), and take her back in a fortnight…

@Glitterfarti what is hear heart rate? and how much is she eating. If less than 500 cals for a few days, I probs would go to a&s to get a full MEEDS assessment.

Glitter is ask for a referral to the ED team, your dd has anorexia, they are the right service for her 🤷‍♀️

I'd also ask the GP to check her bloods, her heart, kidneys, electrolytes could all be dangerously out of whack.

@Girliefriendlikespuppies ED team have discharged her three times in 13 months, they won’t help us. I think we will have to look at a private assessment.

@Glitterfarti could you see a private ED psychiatrist. Even if it’s just one appointment to get everything checked and advice on the best way forward. What the GP said about the ED service not diagnosing her and therefore not having to adhere to their guidance seems dangerous to me.
Even if it is just to put your mind at rest. You must be burnt out after 13 months and three discharges from ED services.