Under 18s therapy engagement

[idontknow202]

This board was really really supportive a few months ago when I was in hospital with my daughter for a month. I'm hoping someone might make a suggestion this time please.
Since she was discharged into community care we've been seen every week or two. My daughter (12) is not engaging with the therapy, she lies she is fine, frequently refuses to weigh in and it all exploded in this mornings session with her telling becoming very upset and rude that she hates the sessions, it's rubbish and nothing they do is helping.
She's lost 2 kg in 3 weeks but this wasn't discussed until 5 mins before the end of the session so it all ended very unhappily as she refused to weigh for them, I told them this mornings weight from home as she wouldn't.
She says she won't go back again.
The therapists spent the hour listening to her explain she was eating when she was hungry and not counting her calories on a few days, which is progress in one respect but she's 'not hungry' an awful lot and refusing to eat. They praised her for making good progress.
They've never made her to follow a meal plan and we spent a long time stuck on 1500 cals as a max calorie intake. They have tweaked the FTAN to support her autism.
I just feel hopeless. If they take her comments as face value great, if I speak up it's not quite as she's saying she's fuming with me and the session becomes derailed and we have a terrible rest of the day with her angry at me at home. They cancelled the appointment last time 30 mins before she was due and she's upset about that. If she stops attending wat on earth happens next?
I have asked a lot for an opportunity to speak to her therapist away from her and it never seems to happen.
She is experiencing chest pains and severe dizziness again and the weight loss shows she isn't eating enough to even maintain like she was previously doing.
I'm made to feel like this is a me problem as thinking all her behaviour is ED related when she's telling them it's not and they believe her. She was in the health weight range previously so they were less concerned but she is fast approaching not and I'm worried it will wait til then before more support is offered.
Any words of wisdom would be lovely thank you!

Hi @idontknow202 it’s good to hear from you, I’m sorry things aren’t going as well as we would hope.

I remember your daughter eating well in hospital and the team being pleased with her.

I would request a session with the team without your daughter. Most of us have encountered the same as you as they are keen to discharge people once the have gained some weight. Your DD is very young, and they should be asking you how she is doing. Do you see a GP or nurse? Has she had bloods recently.

Please don’t think this is just you thinking it is the ED. It definitely is the ED talking. Your DD is saying what they want to hear, and they should be challenging her to see if she is telling the truth, as the scales are saying something else.

They should definitely question what she has eaten and our dietician increased our meal plan when my daughter lost weight. I appreciate them accounting for your daughters autism, but they should definitely be asking you how she is doing. Definitely ask to speak to them without your daughter and make sure you have things written down, as we have seen them make people feel intimidated.

You will get more support on here from others xx

Thank you for your message. She hasn't had one week since discharge from hospital where she has gained weight, she's lost weight each time apart from about a month of maintaining when she was on complete bed rest. Since she's been up and about she's been losing weight each time.
We've not had any bloods done since hospital the first time I don't remember them taking any time second time we were in but I might be wrong.
I have managed to get an appointment with someone in the team next week as a phone call so hopefully that will help somehow.

@idontknow202 they should be doing more physical checks and bloods regularly, they will then show them if she’s eating well. The weight loss will show it too!

I am glad you have a call with them. Are they allowing her to school? It annoys me so much that they wait for them to get to a low wth before they will
help them. Weigh loss and not eating should be enough. They shouldn’t be allowed to only look at WTH. You’re not alone in having issues with the ED team, I don’t know many of us who haven’t had issues.

Remember you’re in control. I think I member her be f you SD? Could Dad be on the call too? Not that it should make a difference, but being united as a couple may help you get through to them? Xx

How is your dd getting along now? Have CAMHS agreed to speak to you alone? I think with them you need to be a squeaky wheel. At 12/13, I would make going to see them non negotiable?

What is her currency? If she wants to go to school, you could use that (presuming she attending). Or as a carrot to attend. You tell her ‘it would be irresponsible of me as a mum to just let you go to school without talking to CAMHS and getting regular check ups and tests.’ Tell her ‘these are things, which are expected by CAMHS and continuing to do them was one of the things they discussed and wanted us to keep up before discharge. We need to keep you safe and this is one of the ways of doing it’.

As for eating, if she’s not having enough, have lots of bits available that she will eat. And tell her to grab herself something real quick and once she’s had it, then you can get going to x place. You can use that a lot.

Have you seen the ressource thread? For some reason I’m struggling to link it. But go a few threads down in eating disorders and you’ll see it.

Sorry just come back to this thread, thank you both for you advice.

I have had two appointments with the family therapist and we just had an appointment in person for my daughter this morning.

We have been told that they are concerned as a service that they are making her ED worse and are suggesting that as she refuses to engage they will stop the face to face appointments and I will get support from the team to support her like that. Apparently they are trying to prevent a hospital admission by backing off.

It has been agreed she has worked out how to beat the system as they told her a loss of up to .5kg doesn't count as a loss and doesn't flag on their system, and she has lost 9kg over 9 months with a few weeks at different times maintain weight as she knows that resets the 4 week review of weight as a concern. She know has 2kg left before her weight is a 3rd red flag and needs to be admitted.

I am just totally at a loss. I found a lovely private therapist who can't see us until we are discharged from the ED team but I'm going to go back to her if we have face to face removed.

She was just asked for an ecg last week due to fainting and she has a 36-40 rise in pulse on standing so I am concerned about her physical monitoring. They said it would either she comes to clinic once a month or sees a gp.

I'm so worried about what will happen. She has been off school since end of Feb. This is her 3rd school year severely affected by this. She doesn't want to engage in anyway as she likes being "skinnier". She has no motivation really, we buy clothes or things that she collects but she really struggles with friendships so there isn't even a motive for doing things with friends.

She has refused to let her dad be part of any of it, she is worried he judges her for being fat. She is also adamant that she is no longer not in control of her anorexia she thinks she is in control and she wants everyone to back off and let her handle it herself as she thinks she is better than before.

Literally feel like I'm going to explode so sorry for offloading!

@idontknow202 it is good to hear from you. I’m so sorry this is happening. Before I reply more, what is her current WTH? Xx

97 now. Thank you.

@idontknow202
It sounds as if there is so so much going on for you and your dd. Firstly, you can see the therapist privately. Just don’t tell CAMHS. They don’t like it. They can’t stop you.

It isn’t uncommon for sufferers to have very low self esteem, which is perhaps why she’s cut friends out. I wonder if your dd has also cut your dh out, because of how she views herself. I am thinking that perhaps she sees herself as so unattractive that she needs to shield herself from the male gaze, even her dad.

If this is the case, the only way to approach this is for him to gently participate. And love her so much. And even if not, the approach is the same. A lot of gentle nudging and love bombing at this stage. If he is able to just start connecting with her, maybe sending her photo memories of her telling her how beautiful and lovely she is, sending texts, leaving her little notes.

He may be rejected for a long time. That doesn’t matter. He just needs to keep going. My dd told me for 6 months straight she hated me and wished me dead. I just had to ignore that. And say things like, ‘that's ok, I love you and I have enough love for the 2 of us’. It’s all the ED talking.

We use a coach, specialising in ND and ED with dd and she told dh to cup our dd’s face in his hands and say, ‘you’re so beautiful’. It takes an awfully long time to rebuild self esteem btw. With my dd it is still a work in progress and we have been working with the coach for just over 2 years. But she’s trained us, mainly me to get 18 yo dd from starvation to just moved out and at university.

As for her thinking she’s in control, this is entirely ‘normal’ with the starved brain. My dd has thought the same, right down to when she stopped eating. Starvation causes changes in brain chemistry and you are not going to be able to get her to see reality.

I can understand why CAMHS are backing off. They’re telling you they don’t think your dd would fare terribly well in patient. My dd wouldn’t have either. So what I would do right now is to get your private care on board. Use the private therapist if you think this will work well. Do ensure they are very experienced with working with ED. And I would also ensure they have experience of working with neurodivergence. Idk if your is diagnosed, but if CAMHS are concerned about how she would cope, I’d be thinking along those lines. People, who are autistic find hospital settings very over stimulating.

I’d also just like to say, your dd is a smart cookie if she’s learned to beat the system for the moment. And that means at some level, she’s aware of what she’s doing, rather than being totally unaware that she’s even ill, so hopefully you can find ways (as in learn, be taught etc) how to use that.

Do take a look at the resources thread for information and other support. www.mumsnet.com/talk/eating_disorders/5566004-eating-disorders-resource-thread-for-parents-carers-and-adults?reply=154984752

Thank you for your message. I've come back to read it a few times.
My daughter had just under a month in hospital in March/ April and it was not a positive experience.
I have spoken to 3 different therapists and all 3 say they can't take on anyone working within the eating team (it was the same last year when she was under camhs the art therapist stopped as couldn't do dual therapy).
I'm just so overwhelmed that they think by reducing her support she will suddenly stop getting worse.
It's reassuring to hear that her pleas of control are the ED talking as that is what my instincts were saying.
You are definitely right about her withdrawing from.fsmily for fear of judgement, she does have a nice body with her dad they laugh about silly stuff and goof about but anything serious is off the cards she won't do that.
They are reapplying for putting her back on the dynamic support register so maybe this time something will happen.
Thank you for listing it's much appreciated

You’re welcome @idontknow202. It’s a real shame you haven’t found anyone, who will work with your dd. Removing a child from CAMHS sounds like a really big choice, that a parent should only take if they feel CAMHS have failed. And what happens if CAMHS see parents doing that as a safeguarding concern? I think trying again if she is effectively no longer seeing anyone at CAMHS would be good.

If the therapists still say no and reading between the lines, I am wondering if you’re saying it’s been tricky to get your dd to engage. It was with my dd. She did for a few sessions, then as soon as she started to open up, she increasingly refused to engage. In the end, dh and I work with the coach, not dd. The coach is only doing parenting coaching now. But her insight continues to be invaluable in getting dd recovered.

I have put the coach’s details on the last post on the resources thread if you want to chat with her. All work is done by zoom. We aren’t local and she was recommended by someone else on here. I’ve also included a list of therapists recommended by Jenny Langley. Idk if anyone she recommends will work with your dd or if any of them are local to do face to face, which might be a factor for you.

In any case, I would highly recommend doing the Charlie Waller 5 part course. Or one from BEAT. It sounds as if you’re going to need to take an active role in your dd’s recovery. Doing the Charlie Waller ones would mean you can then easily access the other topic specific courses Jenny does, including a 3 part series on autism. Jenny wrote the 5 part course delivered by Charlie Waller.

As for your dh being a laugh and nothing serious, that could work absolutely fine if you can do the more serious stuff, which would be something you’d need to learn. This is how things got split at the start with dh and me. The coach described it as good cop, bad cop to try to drag dd back, which it did. And in a united kind of way, so the good cop can’t be permissive and undermine the bad cop. Dh and I both worked under the coach’s guidance to ensure that was the case. The coach and I did sometimes get him to do bad cop when needed, it’s pretty relentless being the punching bag! We no longer work like this btw. Dd is out of her shell, living independently, albeit with still some way to go.

Idk what else CAMHS can offer your dd if she gets her back on the register. Hopefully something she can engage in. You mentioned play therapy.

Hi,

Thank you so much for the resources I have booked onto two different courses and work shop, one on Thursday next week so I'm very grateful for your post.

I really wouldn't take her away from the ED team, she needs different support. I have gone back to one specific therapist I really liked and asked if she can worth with us while she is not receiving therapy. Fingers crossed they might do that while she is just just receiving physical monitoring.

I agree there is a place for positive relationships, we make it work for us. Thankfully we have a really close relationship still but I'm very aware normal teen behaviour is rapidly approaching.
Thank you xx

Great. I hope things will all start to come together and that the therapist is willing to work with your dd. Whatever happens, it will take time and consistency. My dd’s journey has been long. Almost 2.5 yrs now of working on things, not that I’m suggesting this will be the case for you.

We are approaching two years in mid November of this all starting for her and a year of brewing it. It's definitely very tough the longer it goes on but it's ever changing. I read other sad stories on here and it's a devastating illness. Thank you for your support

I agree it’s so so tough. You’re welcome. Good luck with it all and don’t lose faith. With my dd things changed all of a sudden. It’s been quite a change. She went from constantly going into relapse for the entirety of 6th form, wobbly eating over parts of the summer, to moved out for university 3 weeks ago. Her eating is terribly disordered. But it’s a start and she’s doing it.

Thank you. It sounds like you've had an incredibly difficult few years, it must be so hard knowing your daughter is at uni, as great as it is for her.

Can I ask your opinion on this - my daughter has become quite upset this week worried she has cancer as she feels something is wrong with her tummy. She said she feels like it's really hard and it must mean something is growing in there. I'm quite surprised as she is all consumed she is dying, she said she's too exhausted to do anything she feels like she is yellowy pale (she is pale but not yellow) and she said she keeps getting tummy aches lower down her tummy. She got overwhelmed last night and asked to email her ED nurse to ask for blood tests. I have let her, as im wondering if this is actually her feeling pretty poorly with restrictions around eating still. She's spent the day today not moving off the sofa saying she's too tired but says her tummy has eased up, but she does feel sick and doesn't want any dinner due to this.
Oddly a little while ago her watch flagged her breaths per minute (14) is lower than usua her l. I did her pulse which is on the higher end of normal (85) but her blood pressure is on the lowest of low 90/61. I have tired speaking to 111 but it says unusually high demand try again later.
I will of course be trying to get a gp appointment tomorrow morning to get a check up.

I think with those symptoms and everything else you’ve said I’d be taking her to A&E. Serious restriction can lead to racing heart rate as well as a low one. And her BP is quite low. Idk enough about this. But I’d be worried with everything else you’ve said.

Not eating much can cause gastroparesis, this is where the stomach struggles to empty and can become blocked. It is a medical emergency. And will be painful, which could account for the hardness she feels as well as the nausea. The stomach is obviously higher up, the pain she feels could be referred pain.

Pain can make the heart race. And when severe can cause BP to drop. It may be something and nothing. But I wouldn’t delay.

Please go and let me know how she is. And remember to explain she may not be underweight. But it isn’t what she weighs, it’s how much she has lost. ❤️

@idontknow202 i agree with @Mummyoflittledragon

the lump could be poo. Sounds crazy but it can feel has hard as a rock. Especially in people that are small.

Do you know what her BMI is right now OP? I’d be considering A&E as there are serious complications with EDs.

Also if her stomach is hard on the right that’s how my appendicitis started. With feeling exhausted and nauseous, lightheaded and hard stomach.

Good point about poo @Pearl97. It could be constipation / impaction. Restricting causes a slowing of the entire digestive tract. That still requires a trip to A&E to be checked out as she is physically unwell.

@idontknow202 yes definitely needs to be seen today. I would call 111 xx

Thank you everyone for your advice. It's really tricky, she doesn't think she is unwell enough to seek medical help. But she says she's feeling too unwell to eat any tea.
She has been for a poo today and doesn't feel like her tummy is poo related, but then also she doesn't always go regularly this has been the case since we came out of hospital in April.
Her tummy doesn't feel hard to me to gently feel and it's not painful for her to have me feel it.
I've said we will have a rest to watch some tv together redo her obs while keep trying for 111 and then if she hasn't been able to eat by 7.15 we will make a decision about getting advice from A&E.
It's so tricky as if she isn't on board about going she will go silent when we arrive and will refuse any examinations. I hear what you're saying about getting checked and I agree. Thank you

Her current wfh is 97 , so some Drs are quite dismissive

Finally through on 111 getting a dr call back thank you everyone

Well done, 111 can be annoying, but once you get through they should help.

Remember You’re in control and you know your daughter best xx

Ok great, I hope you get called back soon and that that the doctor will understand that your dd may not be underweight, but she is still at significant medical risk.

As for her passing stools, if it’s just hard bits or diarrhoea, that still could indicate impaction or gastroparesis.

My dd used to get a lot of pain when she started eating more or ate more than she was used to as the stomach stretched. She would get quite ill from it, become flushed, then not be able to eat. And then have an upset stomach. She is autistic (although wasn’t diagnosed with autism at the time, but suspected), so lots of heightened sensitivity. So that is a possibility, but only if your dd has increased her intake.