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.

Hello, I hope some of you can advise. My daughter, 15, autistic, is displaying all AN symptoms and behaviours. She is now 83% WFH and will be seen by an ED consultant next week.

However. Her Psychiatrist (history of depression and SH), isn't very good, hasn't asked the right questions, and has put her diagnosis as disordered eating. It certainly started like that, but it definitely isn't that now. Will this affect the care she gets?

I've been told by a private professional that she's in a very dangerous place, but because of this misdiagnosis she's been left to get worse by CAMHS for the past six months.

Added to that I worry that she is also suffering damage to her body. Her ECG came back with flat T waves - which I've read means low potassium? Plus she's cold etc. The stand squat test she's okay with because she had a lot of muscle to lose (previous dancer), but they haven't taken notice of her starting point.

Any advice is much appreciated.

@Propermadam - they should do bloods to check the potassium levels. Had she not had them done? We always had bloods plus ECG. Not sure what a flat T wave means. We had a prolonged QT phase which means the heart is struggling but I think that is different.

@summertimesadness24 How are things at your end? Been thinking of you and DD.

@Curlyhairedassasin - Yes, she's had a few and they're all fine. Apart from increased creatinine because she's not drinking enough. I'm also looking for weight for height info but I can't find any. I'm assuming 83% is low?

83% is low but not that low. My ED team tend to ask to stop or reduce school hours if it drops under 85% though. Some are here with under 70 or between 70 and 80. I found that it is not just the WFH but the speed and direction of travel which is just as important. DD was at her lowest 84% (not that bad) and that landed her in HDU - she was restricting food heavily in the 2-3 weeks prior to gear admission causing a rapid weight loss and her body couldn't cope. It was the sudden rapid weight loss for us which was the issue, not the WFH itself. Hope that makes sense.

How much food is DD managing on a daily basis? is she losing weight?

@Curlyhairedassasin @lyriccat thanks for checking in

We avoided the tube as DD has started eating?! I can't believe it but maybe it was the the shock and thought of the tube ?
It's only small amounts but she did 700 calories yesterday and today has managed a small breakfast - not the meal plan but still it's early days

She did this last time then got home and refused and I'm a little dubious but will be leaving with Fortini this time

@summertimesadness24 that's great news. The threat of the tube is sometimes enough. Fwiw, it took DD about 3 weeks in hospital to manage the meal plan (dietician changed the meal plan a few times with gradual increases). It took time!

I hope they are not planning to send her home soon!

They mentioned tomorrow ?!

I would blank point refuse to take her. Did you reach PALS?

Propermadam as Curly said it was the speed at which weight was lost that was most concerning in our case. She had maintained at a low weight for a couple of years but once she started severely restricting the weight dropped off and bloods and ECG became abnormal. Turning it around was a huge task, even once a meal plan was established as her metabolism was messed up as was her digestive system. It took a lot of patience and understanding of the illness. I would highly recommend reading ‘skills based caring for a loved one with an eating disorder’ by Janet Treasure.

Summertime, that is good news and gives you some leverage for when you get home

Diana22 we’re not out of the woods yet but my sleep is severely affected and I clench my teeth. I’m so sorry to read that you are still affected even though your daughter is mostly recovered. I have heard post traumatic growth mentioned a few times recently and I plan to look into that. Although I suspect it involves counselling and I’m not sure I could handle any more therapy appointments!

Sorry, I only just saw your message - I am not used to using this site so am a bit useless. Your experience sounds exactly like ours - we are basically just getting obs done - and even that is causing huge distress to DD as they never seem happy with her gain - I thought any gain would be really praised but it isn’t. When her weight is the same they then criticise her. So all criticism and no praise - the opposite of how I have raised her (well, tried to lol). Thanks so much for sharing your story, I feel so alone as I can’t seem to find any support groups for carers of ED teens. It’s the loneliest journey I have ever been on.

Thing is this ward is awful - they forget her meals, don't stick to the meal plan, nurses have no idea on ED so I'm thinking it's better for her at home? Listening to other people eat / be ill etc her mental health surely would be better at home with me now she's eating
But I would like her to eat more than half a day before talking about discharge 😡

Do you think she will be eating though with the immediate threat of Ng tube removed? I'd push for a few more days. I really think eating needs to be established and not just a one off thing to avoid being tube fed.

I totally agree it should be longer but they are so keen to get her out

@BagpussSaggyOldClothCat DD is weight restored and is also seeing a psychologist separately to the hospital appts. The psychologist is aware of the SH and is giving Dd strategies but I’m not sure how much it is helping. I have concerns about the location of her SH and the risks associated with it which is an added concern. Managed to get an appt with gp for them to evaluate her Self harm injuries.

@D1ANA22 I completely understand the PTSD and insomnia left from the initial months of feeding DD. Now her AN has got much worse I'm really taking the toll, physically and mentally. I keep a diary which has helped with letting my concerns and frustrations out before going to bed, also talking to DH but that doesn't always go smoothly. I know some mothers have found medication to help but I've never really considered this.

@summertimessadness24 Glad your DD started eating but I feel your anger towards the ward talking about discharge already. I feel they're eager to send her home as soon as they can legally can. My DD was never even admitted because obs were ok, even though she was starving and her bmi was way below the threshold for admission.

We're really struggling to think of ideas for things DD would be happy to eat in the day. For the past 2 days she's just had smoothies. I think not facing bigger volumes of physical food is easier for now, as long as the calories are going in. I've thought of nut butter, Nutella, houmous etc as small amounts with plenty of energy but she says there's no way she'll eat them. Has anyone else faced this and come up with any solutions?

@lyriccat when my DD was in the clinic, the meal plan consisted of 3000+ calories a day. If they didn’t gain at least 1kg a week, they had a meal increase. This was extra puddings or toast etc. A large proportion of calories were drinks. They had 300ml of fruit juice with breakfast, then 300ml whole milk at every snack time (4 times a day). So over 1000 cals a day were from liquids. Maybe this would be easier for your DD as it’s not “food”.

@lyriccat Is she having milk or shakes? DD is very restricted and we hugely struggle but someone here told me to add double cream to the milk. I just decant it into the bottle, give it a good shake and put it back into the fridge. It doesn't separate. That adds quiet a few calories. DD wouldn't touch it knowingly so we have to hide fats.

@lyriccat - what do you think would DD eat? easier to give some pointers then. Would she eat home made foods? Nuts are very dense in calories. If she eats nut/energy bars, there are a few on the market with 200-300 cals. Ice cream? But smoothies are good - much easier to stuff them with calories than many other foods.

@summertimessadness24 I would also be one to point blank refuse to take her home until she is following the meal plan. I worked also be looking for a second opinion. What's the recent law that has come out about keeping children safe after a girl died because their parents were ignored when they requested another opinion ?

www.england.nhs.uk/patient-safety/marthas-rule/

It's only from April but should really help you fight your corner alongside PALS and CQC

They are saying they are not there for her to follow the meal plan they are there to assess her emergency needs and as her obs are ok she is ' medically well '
Because she has started to eat ( not even 24hrs yet) they said she can ' recover at home ' this was the mental health nurse who wants her discharged

Rapid weight loss or different scales? 3kg in 3 days. She has been unwell and is on abx for an ear infection, still eating, probably less than normal as obviously chewing hurts. General check up three days ago for weight and height, she had put on a good amount and gone from 83% wfh to 86% (not our normal dr so in a different room and she’d had McDonald’s half an hour before appt with a medium diet lemonade, so I wasn’t convinced). Dr and DH congratulated her on weight gain and I was a bit like, oh no, don’t say that….

anyhoo, back today, to see a third dr for ear infection and weigh is 3kg under what it was on Tuesday. Is it likely she’s lost that much without fasting or should I chalk it up to different sets of scales?

@Curlyhairedassasin She's very aware of what goes into her food, who prepares it etc. She won't let me make anything without her watching. I've tried insisting she stays out of the kitchen before, but then she refuses to eat it altogether. She also doesn't drink cow's milk, only almond milk (no allergy, she always used to have cow's milk as a child). So far she's just been having smoothies made with vanilla ice cream and fruit. I'll suggest nuts, I hadn't thought of that. She's so aware of calorie content in everything, I'm constantly having to second-guess her. It wasn't until about a year ago I found out she tracks everything on her phone

@lyriccat I'm sorry to say but one major part of DDs recovery was staying out of the kitchen. If she refused to eat I simply got car keys and told her we were off to hospital.