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

[Curlyhairedassasin]

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

Not much change here. DS is being more difficult, his diet isn’t too bad (around 1000-1200 calories) but he has told the ED team he wants no more input from them. He doesn’t need any support, they are the only ones with a problem. He then refused observations.
Ultimately the ED team told him if didn’t agree to observations at home he would be taken to hospital so he acquiesced. He’s been told next week he must agree to bloods too as they’ve not been done since April.

He had actually gained a little (around 400g) so is now 74% wfh

I don’t get what’s going on with him though, previously he has agreed that his intake is too low and acknowledged that he needs support even though he wouldn’t engage with it. But now he won’t even acknowledge there is a problem. He feels his weight and intake are good.

we are muddling trough. DD still feels suicidal so still needs round the clock supervision. She started at the PRU and really enjoys it there which is fab. She is doing one day per week at her mainstream and she self harmed on both morning before going to mainstream. She finds going in hugely stressful with hallucinations really bad. But been told by team (ED, social services, school that we should persist longer since it's early days though). She also is not talking at all in school now. (both PRU and mainstream). This is newish. she was always quiet and shy but this is a step up. and she also is not speaking to all professionals involved anymore. Only communicates with gestures etc. PRU query selective mutism. I have applied for en EHCP now as I think we need a different school long-term so will see how that works out. Expecting a battle though going off my experience with DD1.

Sorry wooden that things are so persistently hard at your end too. Are you sure he gained weight? I couldn't imagine it with this intake. DD is manipulating her weight before weigh ins with water loading, stuffing things in her pockets etc. Keep an eye out for those.

@Curlyhairedassasin So pleased the PRU is working out. @WoodenTrain , I was wondering about your DS gaming the weigh-in too. Anorexia can make them very tricksy. My DD recently told me she got out of the ED unit by taking the chicken fillets out of her bra and sewing in pound coins. (Apparently she could hardly stand up!)
Just reading both you posts got me musing - it does seem crazy that the NHS only seems to be set up to deal with one issue at a time, e.g. can't deal with AN when ASD also present, when so many young people are going to have co-morbidities which are mutually reinforcing. It also seems crazy that people with severe mental illness can be deemed to 'have capacity' to refuse treatment, because, well, they have SEVERE MENTAL ILLNESS!!

DD is up from 85% WFH when FBT started 2 months ago, to just reaching 90% this week.

She’s beside herself with distress a lot of the time though, her brother is stressed out and my partner and I are near to breaking point.

It just so difficult to make her eat. And then to try and recover in time for the next feeding episode.

It did cross my mind that DS is manipulating his weigh-ins as he went to the kitchen for a few minutes shortly before they arrived. I was unsure whether I should confront him about it, as I didn’t want to put the idea in his head if he wasn’t.

I’ve found that having a diagnosis of ASD can be a real barrier when trying to access MH support. We’ve been denied support several times in the past on the basis that the problem is ‘ASD’.

Initially back in March we were told that DS had ARFID (mostly because his care coordinator asked leading questions and he told her what he thought she wanted to hear to get her off his back) and as ARFID is due to ASD they don’t support with it! They suggested I look for a charity that might be able to help. I was appalled, I really argued with her and she reluctantly agreed to talk it over with the ED team who fortunately decided he needed to be seen ASAP due to his very low weight. My point is though if I was dealing with ARFID I’d be completely on my own.

Morning lovely people,

Been reading along and must update on my DS too soon.

Sending hugs to you all.

I wanted to jump on as @WoodenTrain I'm not sure they've got that right - my son has ARFID and does not have ASC - something we felt but we also we started the assessment process with CAMHS as to be honest my son baffled them on how ill he became so quickly and how out of character it was for him previous to all this. They quickly realised he was nowhere near meeting the threshold (for want of better phrase) for ASC and looking into it further so the process stopped following parent and school information which we agreed with. It makes me cross that there is so much misinformation out there but also such a difference in care depending on where you live.

Keep holding on ladies, I know only too well the feeling of digging deep and living meal to meal, the realities of long hospital stays and my DS being an inpatient. Sending love x

@NanFlanders wow, that is effort. DD is more obvious. She rocked up in some sort of Lagenlook to the latest weigh in in 3 skirts, layered over a dress and 2 cardigans in top and a ton of heavy jewellery 🙈. At least we know that the scale is giving us a highly inflated number but sewing in coins and hiding chicken fillets in the bra? Wow. But I suppose if there is a will, they will find a way. The ED is always a few steps ahead or seems.

How are things going with your DD? how all us well?!

@CurlyhairedassasinThanks for asking. She's doing really well, I think. She had a friend from the ED unit come to visit and, for a surprise, they took me and the girl's mum to a gourmet burger joint. Burgers were her real fear food She used to self-harm when she thought about a MacPlant burger I forced her to eat (this was 13 months later) because-she felt so guilty. I was so proud of her. She has 2 part-time jobs - waitressing and tutoring, and 3 uni offers. Had booked to go to Paris for New Year and is vlogging abput recovery on Insta and TikTok. This time last year, the ED Unit were talking about her going into sheltered accommodation, as our relationship was so bad (she would send us home when we came to visit) and adult services were reluctant to take her given her lack of engagement. It was not a good prognosis. Do hang on in there everyone - it's awful where you are but I really believe things can and will turn around for you and your DC too.

oh @NanFlanders. that's so heart warming to read! hope the burgers were good! I just feel there is no light at the end of the tunnel at the momen. DD still has apparently firm plans to end her life. Suicide watch is so exhausting. It's so encouraging to read happy endings. Things were so difficult at your end at time. Amazing how she turned it around.

@NanFlanders that's such fantastic news! So glad things are going so well, that's so great to hear, and it's super encouraging.

Sorry things are so hard @Curlyhairedassasin - hope there's a change soon xx

I was told by the private ED specialist that dd would be unlikely to be diagnosed because she doesn’t have a diagnosis of ASD. But in her opinion if she did this would be taken into consideration and her eating would be seen through this lens and it should lead to diagnosis. As your ds has ASD, that would have made me think his neurodiversity should be taken into account. It would also indicate to me that services in certain areas are way better than some areas than others and not good in my or yours. This is all so incredibly frustrating for you especially as your ds, like my dd doesn’t see there is an issue.

I’ve just completed the 5 part parent / carers course for the second time this weekend over Friday evening, Saturday and Sunday for loved ones with an ED. They run it very regularly. Dh attended too for the first time. This time with someone directly through the Charlie Waller trust. Her name is Catherine O’Dea Hughes and she has ADHD, is recovered from anorexia and has got her dd over anorexia. The course was written by Jenny Langley, whose course I attended last time around. It is just so effective and I find myself starting to be able to apply the knowledge more and more.

Jenny also runs a 2.5 hour workshop on autism every month or so along with a range of other courses based on the New Maudsley techniques. She’s doing one later this week and I’m attending for the second time as it was so overwhelming the first. They actively encourage you to do so.

As for dd, we’ve had several blips along the way with stomach pain but not as bad as a month or so ago when she was heading in the wrong direction and from her appearance (as she won’t weigh in) lost some weight. She’s back on track now and hasn’t had pain since last Thursday, which is great. I’ve managed to get her eating small amounts of olive oil without realising and I have been eating crackers with butter every day with marmite for months and months in front of her. She has eaten marmite a couple of times on said crackers (no butter) but apart from that it’s been bread with ketchup. Her brain seems to have finally worked out that it needs a decent source of pure fat and a week and a half ago, she put a slice of toast in the toaster and added a tiny bit of butter as part of her evening snack (which she makes herself as this snack is the easiest). Since then she has been eating this on a fairly regular basis, upping to 2 slices and more butter and declared that she’s a bit obsessed with butter atm. Last night she ate 3 slices and lashings of butter plus a couple of krisprolls covered in a thick coating of butter. I think she may have finally gained a little weight as apart from the aforementioned weight loss it had plateaued for months and months. Micro steps.

Dh is finally on board albeit I think he is going to need a lot of nudging to remember to do things regularly and it’s all much newer to him than me. Due to dd’s likely PDA profile, historical ARFID tendencies and her strict refusal to get her to eat anything she doesn’t want to ever, we are rolling with resistance. This is a Motivational Interviewing technique to elicit change taught on the courses dh and I have been attending.

Posted too soon and I should have added, thank you for asking @Girliefriendlikespuppies. It’s so lovely that there are people out there, who care as it feels very lonely. We don’t have a big support network. I am not local and dh is from France. I also should have said I’m sorry to read of everyone’s struggles and heartened to read stories of those, who’ve made it to recovery. So thank you all for sharing. Things definitely feel lighter over here and please don’t give up hope. Change can happen. 😊

It’s great to hear how well your daughter is doing @NanFlanders gives me hope.

Does anyone know anything about/have experience with DSR or C(E)RT?

That should say C(E)TR sorry!

Thanks @WoodenTrain . How's your DS doing today?

Much the same really. Just don’t know how to help him which I find frustrating. But he’s being added to some sort of register (DSR) and a C(E)TR is being arranged - they said it was to get support for his autism

Hi,
Yes, my daughter is on the DSR register because she is autistic. They have a RAG rating and depending on the rating, they have frequent meetings which pull together all the professionals involved to make sure that they are getting the best support they can. The aim is to keep them out of hospital or minimise the length of hospital stay.
We had a CETR as my daughter was in a general paediatric ward and they were trying to decide if she could be discharged home with community support or would need an inpatient unit. They talk to everyone involved and then produce their recommendations.
I would say it has been mixed - it has been helpful to have the MDTs and they have got professionals involved from MIND and Autism intensive support team which is an extra resource. However, a lot of the things we asked for still couldn’t be funded e.g art therapy and there seems to be a lot of passing the buck from one agency to another, e.g health saying social care should fund and vice versa.
we were discharged home and getting on reasonably well thankfully but I don’t think there is a huge amount more they have offered as a result of the cetr or the DSR but then I don’t know what it would have been like without it !

Hi All, I have been reading through the recent messages and just wanted to say hi to everyone. I think a lot of us are in the same boat in the sense that our DC are in a better place but not fully there yet, which is exhausting.

@NanFlanders it is lovely to read about your daughter’s continuing recovery. When I think back to one of your posts where you wrote that a new circle of hell had opened up! She is amazing.

@Curlyhairedassasin I’m so sorry that your daughter is still in such distress and the impact that must be having on everyone. Does she have to go to her normal school one day a week? Why can she not just go to the PRU until she is in a better place mentally? I appreciate that there may be a good reason why she has to go but if it is causing her so much distress, then surely it should be a priority to find an alternative. I hope her team are on it. Recovery seems to hinge on them having motivation to get better and it sounds like that might be possible at the PRU but not in her normal school. Sending you and everyone else hope.

@Shanghai101 they start with 1 day in mainstream per week, and and build that up to 4 days in the last PRU before going back fully. Camhs say she should not go back to mainstream at all as she is too unwell and they clearly cannot meet her need and we need a long term alternative. ED peeps say she should go to the contact days as there isn't really a long-term alternative as the PRU cannot be extended and only option is going back to her old school. I don't think that is possible at all unless there is a miracle. Realistically, I think we need to get our head around that she won't be in school anymore once the PRU placement ends. I applied for an Ehcp but turn around times locally are over a year even without tribunal. I guess we deal with it when we cross that bridge. I have a school meeting lined up to discuss re-integration. will see what they all suggest.

@Curlyhairedassasin is there an autism support group where you live? Maybe you could ask CAMHS and they can put you in touch with them. We have one in our area and it is very good when it comes to advice on EHCPs, specialist schools, etc.

@Shanghai101 not that I know. And she is only on the waiting list for assessment (4-5 years long). I have done the whole Ehcp thing including tribunal with DD1. I feel pretty well equipped to drive this through myself. There is the local Sendiass but i got burned by them in the past and will avoid them.

Of course. You have been through so much with both DDs.

While we were on the waiting list for an ASD assessment, we managed to unofficially meet with a family Therapist from CAMHS who told us that our DC definitely had autism and that was helpful with getting some special adjustments at school without a diagnosis. With a 4 to 5 year waiting list for an official assessment, I would hope that there is something similar in your area that you can access, although you do have to make yourself a real PITA to get anything but again you will already know that from bitter experience.

There was yet another discussion on the radio this morning about how the education system is failing SEN pupils and how almost all of the pupils who are out of school currently are SEN. Apparently the numbers have increased dramatically in recent years. Sorry @Curlyhairedassasin, I wish I had some useful advice for you.

@Shanghai101 Our ED psych put it already in writing that DD most likely has ASD. Issue is her mainstream school. It's far too big for her to cope now and they are (I think) trying to manage her out as she is too much bother for them. they even told her not to come in during contact days and stay at home instead. I can only hope that the LA agrees to assess for a plan and that we don't have to appeal at the first hurdle. Should find out in a few weeks 🤞🤞🤞She is still hallucinating badly, still has plans to end her life (still on suicide watch), still frequently self harming (usually happens when she is alone in her room for short periods of time when I am side tracked with DD1/work/house work), no idea what she is using as all sharps are locked away. Several room sweeps produced nothing. I sometimes wonder if she would be better off as inpatient.

On the upside, I am doing ok considering all the crap going on. I am through phases were I can barely cope and then I have weeks when feel better. I am having better weeks at the moment.

Hope everyone else is doing ok?!?

@Shanghai101 Thanks. We are so grateful for all the support. Things really can turn around.

@Curlyhairedassasin Did you know that you can request a Right to Choose assessment for an ASD or ADHD assessment with any private provider who is under contract to the NHS? It's still a long wait, but we have been told 12-16 months to get our son assessed for ADHD - which is better than 4-5 years! https://www.clinical-partners.co.uk/nhs-services/right-to-choose. I'm sure getting an (NHS) autism diagnosis was really helpful for our DD. I also think Alder Hey ED services pushed for it given she was so ill and there was a risk of her 'ageing out' of the system. Could your ED services advocate for your DD to be prioritised at all?

@NanFlanders I am actually just looking into it and found a few providers. None of them local though so assessment is down via zoom. But that's probably the next step. I agree, we cannot wait years for that on the NHS.