Support thread 12 for parents of young people with an eating disorder

[greydoor]

Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Curlyhairedassasin she's had 2 ECG and they show as normal. I've bought a monitor from British Heart Foundation so I can check at home too. Bloods are due to be done in two weeks (the waiting times here are horrific).

I've told her Dad if anything happens - she falls, faints or feels dizzy, I'm taking her straight to the hospital. So far, despite screaming at me at every mealtime and bedtime, she's eaten pretty well so I really hope I can keep her from deteriorating and turn things around. I'm just stunned they effectively turned her away despite her symptoms.

Welcome @WhatsitWiggle sending you virtual support. I know how distressing the screaming is but it's a good sign that you're getting the upper hand on the ed and taking back control, it fights pretty hard but you can do this.

My DD got awarded PIP today. Does anyone have any experience on how soon they pay out? x

Hi all

Been away for some time but DD is doing very well physically but not mentally

WFH over 100% and she's doing all her FBT which has just come to an end - it's been 5 months and although she is going she isn't engaging

They've now offered her CBT - we had the initial appointment yesterday and the lady was lovely and I think it's a great option

However DD does not
She says the lady 'talked to her like a baby'
I get what she means but I've said she is just talking to you in a nice soft tone!

The CBT lady said she needs to think about if she wants to have it as she won't be forced and it has to be her decision?!
She's 12 - 13 in August, hates talking about her feelings but is very down, very low and is self harming ....
She is back to eating but only because she has to
She isn't happy and doesn't feel any better since around jan when she was hospitalised for not eating etc

Half of me wants to encourage her but the other half of me is saying what's the point sitting in a room with her when she has her head down the whole time not engaging asking me to talk for her ?but we need to try and not give up? But I get CBT isn't for everyone

The therapist indicated that if she does this then it will be stopped

Anyone experience this or can advise?

Thank you x

summertimessadness24.
I am not sure whether this would be "Normal" CBT or CBTE (specially for eating disorders and which follows a strict pattern). Cbte worked very well for my DD ( did not do FBT) but it is I think really meant for.older teenagers and adults.
One thing is that indeed your DD has to agree to it....

Hi @summertimessadness24 My dd is older at almost 16 and we are using the private route to try to get her to open up and eat more, which is working a little and thus far, we’re not finding CAHMS very helpful.

The woman, who is working with dd is taking things very slowly as my dd is in absolute denial that she has an issue despite being very emaciated and thinks we are wasting her time and our money.

It’s totally normal imo for your dd to not want to engage, especially with you in the room. She’s been through such a lot and is ever so young. I wouldn’t give up on this yet... unless you find the type of therapy unhelpful. And I wouldn’t be expecting a great deal from her at 12/13. I called 11/12 the headless chicken phase because dd and her friends lost all common sense due to the brain rewiring so your dd really is going through a lot.

Now that your dd has had a session, you could perhaps ask the counsellor if your leaving the room would be helpful. If you’re going to do this, I’d maybe have a quick word at the start of the session rather than in front of your dd. Idk if your dd would agree, she may need some persuasion. Mine definitely did and spoke a lot more once I left the room.

Anecdotally, my dd’s friend has been in counselling for about 2 years now (not for ED), so since she was 14. She likewise took a long time to warm to the counsellor and be willing to properly engage. She also didn’t want to be there. She is encouraging my dd to go through the process and dd has said she will but it will take time for her to open up…

@summertimessadness24 my dd always opens up more if I'm not in the room and is fully assured that what she says is private between them.

We had an appointment with FEDS today, just a medical review. The lady was lovely and explained that the reason they hadn't accepted us to the programme was DDs autism. That the programme is fixed and rigid and doesn't allow for the control that DD would want or need. We've come to an agreement that she needs to eat 2200-2400 calories a day to reach a healthy weight.

Their idea of healthy weight though is based on her height - she's always been around 25th percentile for weight and 50th for height, so I was a bit shocked at how much more they wanted. But I guess we'll see where she settles after a few months.

She hasn't screamed at me today (yet, there's still time!) and she goes to her dad's later

She's so contrary - she always has been, but she's swearing blind she didn't tell me she was hungry or that I was making her fat or that she was not going to eat over maintenance. When that's exactly what she said! I'm trying not to engage in arguments about the process, and distract but it's hard when it's all she'll talk about.

Was it at tribunal or straight away following application? If the latter, it’s likely to be very soon, some even get the first payment in their account before receiving the notification. You should also receive a letter in the post with the dates of payments.

If at tribunal, it can take longer for the DWP to catch up, but you should get back pay.

@WaitingForMojo

thank you, we got the txt on Tuesday to say it has been awarded no need for a tribunal thankfully. The money arrived yesterday along with the letter. DD has got it until 2027.

Does anyone's YP with AN hear voices (not the anorexic voice talking about food iyswim but voices calling their name etc) and sees things that aren't there, struggling to understand what is real and what is not? Really worried about DD's declining MH. Seeing cahms later this week. We appear to be on a downward spiral. Weight going down too but it's really not the main issue anymore. Just wondered if anyone's child had experienced similar things and of they can be part of the AN.

We haven’t experienced similar Curly but a friend whose child was bullied has been diagnosed with complex PTSD and ASD and I believe they have hallucinations. I would see a psychiatrist for a proper diagnosis. Sorry that you have this additional worry on top of AN.

@Curlyhairedassasin No voices here, not that Dd will admit to hearing anyway. As Shanghai101 says I would be speaking to her psychiatrist.

Is she on medication?

Dd also hasn’t said anything about hearing voices Curly. I know she has a voice in her head telling her not to eat but as you say this is different. I hope you get some help for this soon.

Just by way of update, my dd went to hospital to do some medical obvs yesterday. BP, pulse, oxygen sats plus height and weight… they cheated on weight by putting her on a weighing wheelchair and didn’t tell her. For dd with massive medical anxiety, which can bring on a seizure, that’s huge. And she didn’t have a seizure. Pulse has lowered but 55-57. BP normal range. Oxygen sats 100%. Just over 80 wfh. It is such a relief to get this information as I now know she isn’t as vulnerable as she could be with the weight loss. And she’s lost 1.2 kg in 3.5 weeks, which means this is also slowing and probably because she’s eating a little better and she’s stopped dancing.

Thanks all. We are seeing the ED psychiatrist next week in any case so will discuss. We are on Sertraline and Olanzapine (have been for a year).

@Curlyhairedassasin Yes that describes my dd fairly well. She has CPTSD and for many periods of time despite her very low weight the eating is not the biggest of the problems. SH, SI and hearing voices and seeing people in dreams/ hallucinations means she struggles to cope with living.very difficult to push the eating during this time. She is on anti- psychotic medication which may be worth exploring but it’s not a quick fix and we’re seeing little changes since starting tbh.

@AskAlexanotme Thank you for replying. I am sorry your DD is struggling with this too. Yes, it feels like the AN has taken a backseat and we cannot really push too much.

She is already on antipsychotic meds - Olanzapine. But it's only a low dose for AN (to deal with the intense anxiety around food). Dose is not intended to treat the other issues (which only became apparent recently - will discuss it in the upcoming appointments). Are you accessing any other therapy?

What would trigger a CPTSD? Things are obviously very difficult for her and I know she struggles hugely with having a sibling with complex SN but other than that, there hasn't really been any trauma - at least nothing obvious to us.

@Curlyhairedassasin was DD's sertraline increased recently? As well as the SH previously mentioned I have heard some reports of hallucinations on Sertraline (anecdotal but also see it is mentioned as a possible side effect on NHS site). Worth exploring with her psychiatrist if this has started since the dose increase?

Yes it was, well about 6 or 8 weeks ago. I will bring it up next week when we see the psych. Thank you. It's gotten definitely much worse since the dose went up.

CPTSD for her relates to childhood abuse.

My understanding is that it is similar to ptsd with additional symptoms including more emotional disregulation , dissociation and suicidal thoughts. usually from a more prolonged period of trauma rather the perhaps one off incident and often involves someone or a situation where the person would expect to be cared for ie family.

it doesn’t sound like this fits with the difficulties faced by having a high needs sibling but thought I would share as it resonated with your dds symptoms. It’s hard to know what’s ED and what’s ptsd and therapy is difficult because of the low weight.

interestingly my dd is also on Sertraline after several other ADs over the years. No recent increases but food for thought thank you @GrannyRoberts

Hi mummy that's good they've managed to get these obs, have they talked about bloods and the ecg? Both of these are really important in terms of understanding where your dd is at physically. 80% wfh is very low and further weight loss is worrying, if she goes below 80% wfh you're in no school/complete bedrest territory.

How much is she eating now? Have the ED team got a plan in place for her?

Curly I'm sorry to hear things are so hard for your dd, my dd had an ED voice which she said was very loud and clear. She described it as a man's voice who shouted at her if she ate too much but could also be nice if she didn't eat 😢

I think psychosis type symptoms can be part and parcel of anorexia and being at a low weight as the brain hasn't got what it needs to work properly.

The voice disappeared once dd got to 100% wfh although dd still has an inner critic she knows it is her rather than a separate voice iykwim.

Dd also had disassociation when at a low weight and said everything felt surreal as if she was here but not here.

Definitely discuss the meds with the psychiatrist though

A little hope update from us, we're on holiday at the moment, (only a short caravan break in Devon) and for the first time in over 4 years I've actually felt fairly relaxed about dd and food.

Dd seems to be eating well and making good choices. She looked at the caravan breakfast bowls and said 'they're too small and dug out a measuring jug and said can I have my cereal in this?! 🙈😂' I obviously said yes!

She also ate an ice cream (complete with flake) and chips for lunch Ystd without comment and helped herself to some biscuits after dinner in the evening.

It all feels much more normal and how life should be ☺️

We're still not 100% there but it's the best it's felt in a long time.

@Girliefriendlikespuppies the voice isn't eating related. DD is adamant it's not an anorexic voice. She also sees things which aren't there. She feels suicidal and school are now refusing to have her and she is currently at home with me full time. She says she doesn't know anymore what is real and what's not. Her self harming is bad. I am so worried about her :(

@Curlyhairedassasin
I am so sorry for your dd. Can you contact the emergency ED helpline/ get hold of the psychiatrist? Or go to A&E if she’s suicidal? Sorry I’m not any help as I don’t have the experience but I really feel for you. This sounds very hard to manage and I’m just wondering if you cam get some help on before next week. Xx

@Girliefriendlikespuppies
That sounds so positive for your dd. I’m so pleased she’s getting on well, bless her. ❤️

They did talk to dd and me about bloods. Dd refused and getting her in for the basic tests was already a huge step for her. They are going to keep trying and suggested sertraline if dd will take it. But prescribing that won’t be until I get another appointment but for an immediate test, they’d offer gas and air. As for the ecg. They’re going to request it but the ED doctor said that they wouldn’t do it as standard for a patient presenting as well as dd. They’re more doing it because of her seizures.

Dd is eating quite a big more and I’m trying to step it up this week. Last week average about 800 calories. This week she’s at 6th form trial. So Monday just over 1000 calories and yesterday, about 1150. She’s already eaten just over 800 today with a promise of about 700 more. We are having some tantrums around eating but I’m being a lot firmer now exams are out of the way and dd is wanting to do more things. She’s got prom tonight and the prerequisites have been high to be able to go to the after prom party and sleepover. I’ve also tied it into engaging with her ED coach and trying to reintroduce foods slowly… I made the alternative very unattractive. So she’s doing better. My fear is next week she will go backwards as she was eating those calories in one sitting last week so it’s important I keep up the momentum and be hard on her.

I don’t have a plan with CAHMS yet. Stupidly I didn’t ask what the next step would be. I’m going to follow up in a couple of days it’s been really hectic here and I’ve been doing stuff for prom etc.