Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

@littlebabycheeses99 it is nice to hear a bit more of a positive update from you. CAMHS have a duty of care to your son, and I hope they can see he needs their help. They do ask a lot of questions etc so I’m hoping that even for an intelligent 17 year old, they are able to see how much he needs there help. As we have said before, please look after yourself xx

@10YellowTulips its so hard to know what’s best with school. I struggled so much not knowing what DD was eating!

I’m really pleased that you were able to ask for what you needed and they have agreed. Your DD will know that if she goes back in any way she will need to return, which will hopefully keep her eating. I am really pleased to read your update.

Sigh. My DD seemed to be doing so well and was gaining weight but scattering her father’s ashes a couple of weekends ago seems to have spiralled her backwards. Her brain just will not switch off from the anorexia.

She had an appointment at the endocrine clinic today and her hormone levels are awful. Sending her for an MRI to check her pituitary gland before giving her oestrogen patches. She’s not had a period for years.

onwards and upwards

@CuppaTandBicky
Thanks. I do pretty much everything for dd as well. Bless their cottons. I think dd is in for a shock.
It’s nice to hear you are having a good moment. It’s great when you can relax, even if it’s for a short while. I agree with you about the shock. I remember that Girlie was one of the people telling me how it is. That was so scary.

@10YellowTulips
It’s great your dd is still eating, that sounds relatively positive even if she’s reduced a bit. But yes, understandably it needs a close eye as any big reductions, like my dd has been doing, for example, causes stomach shrinkage. I can imagine she is anxious for school. Fingers crossed once she gets the setting confirmed and it starts, she’ll be happy and the eating will creep back up again.

@littlebabycheeses99
Yes, my dd has a lot of demand avoidance. The ASD assessor said in her opinion it is anxiety based, rather than PDA. And like your ds, she eats much better when not at home. She eats out a fair amount with friends. At one stage she could only eat out with friends.

A lot of us long termers, since I suppose I am now have dcs with a complex profile. It’s not good when they find a way to manipulate. Have you told CAMHS about your ds’s potential lying?

I hope the extended assessment goes well and they decide upon a diagnosis. Because your ds already has mh issues, probably a lot of anxiety, I presume they’re deciding if this is an ED or potentially anxiety leading to a lack of intake or whether they think he should be signposted elsewhere. I found this process hugely frustrating. So please hang on in there.

@Desdemonadryeyes
Big hugs. I’m so sorry for you and your dd. That sounds so emotional. Oh gosh that sounds so tough, no period in years, she must be significantly under where she needs to be. I’m glad they’re taking it seriously and looking after her hormonal health.

Is she still managing to work ok? I’m figuring by the sound of it, that would be the last thing to go. I hope she manages somehow to pull herself around. It’s so hard with adults. And your dd is well into her 20s, whereas although mine is in full on ‘I’m an adult mode’, your dd really is, so probably harder again.

As for us, dd went with us to the disability event. I blew it, because she was vile to me just beforehand and I was tired, had anxiety about all of it, so my mouth just kept on moving and I didn’t handle it well. When I’m anxious, if I don’t keep things in check, I end up non stop talking, like today. I just didn’t have any capacity to be calm. Dd ended up stomping out, because I said she’s autistic, which she doesn’t accept, and has all these different needs. But I think dd would never have lasted long there anyway. It was a bit of a triumph to get here there at all.

Anyway I spoke to 2 lovely ladies from disability / student services, who really helped and said they’ll work at her pace. So looking at it objectively, from what I said on arrival, they knew they needed to be fully aware of dd as she is a bit of a special case really. They said they do sometimes get students like dd.

One asked me to email dd’s student number, so that she can touch base with dd once a week. And asked me to send more information over email. And said she will just let me know if dd has responded as she’s allowed to do that, but not to go into specifics. And reassured me if they’re concerned about her, they would break confidentiality to contact me (which I know, but it’s always good to hear if). I already knew this university was good for SEND as we visited it first and I got a really good feeling about it, but originally dd didn’t want to the do the course here, but changed tack after her results. Hopefully this will be what dd needs.

@Holly221288 your dd sounds so unwell, personally I think admission is inevitable at this point, can you take her to A&e?

It’s been a busy few weeks here but we seem to be plodding along okay. One thing dd has started doing which is new is bolting eating her food. She eats very fast and told me she barely chews it as ‘just want it out of my mouth as quickly as possible.’

🫤 we went to Nando’s over the wend and she ate a veggie burger and chips in about 10 seconds and then felt really unwell and was nearly sick.

We talked about it and dd was quite aware this was ED led which was good I guess.

We’re off to Rome next week for a few days so I guess I can keep an eye on it. Not great timing for a new issue two weeks before she goes to uni 🙄

@Girliefriendlikespuppies
That doesn’t sound great either. I’m just plugging on at trying to get my dd to eat. We have less than a week left now and I’m crossing my fingers all will be ok for her. Hopefully the trip to Rome will help your dd.

Hi @Desdemonadryeyes that sounds so tough for you both. I’m glad she’s allowing the doctors to check her etc. How are you coping? This will be a very difficult time for you, supporting your daughter would be hard anytime, nevermind when you are going though so much yourself xx

Sorry that's such a lot to have to deal with for you both. I hope the MRI goes ok and the patches help.

Thanks for all your concern. I’m a tough old boot but following extensive leg surgery in May I randomly decided to stop my strong opioid painkillers last weekend. I was suddenly hit by a massive low. Never felt so bad in my life. I googled and apparently it’s a side effect of coming off the medication.

Gave me a scary insight into what the mind/brain can do and how little control we have over it.

Hello everyone, I apologise for not responding earlier. I think this time of year can be so difficult for us as seasons change, school/college, university resumes and we become more aware of our children (no matter how old they are) maturing. My sons did not complete formal education due to MH issues, so this time of the year used to be a little challenging for me because it marked another year that they had been 'out of the system'. I am playing the long game now, and see both sons benefiting from lifelong learning/mature studentship in the near future.

My son is struggling, and as several people have stated, we can feel almost impotent once our children are adults (or post 17) because the individual has autonomy over their care (as long as they are deemed to have capacity). In my son's case, this means he can text to miss/rearrange appointments, and engage just enough to 'keep people off [his] back'. The ED is very much in control.

Yet, an added complication is that the ED or my son's need to control, is very much at play in our home as well. We have had the chance to talk about this, and my son has told me that he wants to live on his own, where he does not have to stress about changes in the environment ( I work from home, and, for example, when he is out on one of his extensive walks, he will worry that I have not put the kettle back exactly as it should be, or that I might have been out in the garden and accidentally brought mud into the kitchen). I also enjoyed a breathing space when he was in hospital. Ideally, we would like my son to live within easy walking distance, and to have a package of support to help him. Yet to achieve this, he needs to engage with professionals.

Anyway, that is my Sunday morning grumble.

@Girliefriendlikespuppies I hope Rome goes ok and that her awareness that it's ED led helps her get a handle on it quite quickly. Bless her, maybe it's down to a bit of anxiety around starting uni?

@Desdemonadryeyes that is scary, I hope you feel better soon. It sounds like you and your DD are going through a lot.

That sounds so frustrating @sum12luv, the ED is looming large in your home yet because of your son's age you are not able to get involved in his care. Do you think he'd allow you any involvement if he knew it would ultimately lead to him being able to live alone?

Things aren't great here. DD has basically been in bed since Friday night. She says she's just tired and that might be the truth, the combination of college and olanzapine might be exhausting her (although the tiredness from the meds should be lifting by now). I know from experience though that she sleeps a lot when she's feeling low and I'm worried she's not coping mentally with college. She is eating but, as ever, not full meal plan. I'm hoping today she'll engage with me a bit

Sending good vibes your way @Weightlossworried starting college is a lot. I think you’re doing the right thing to leave her for now. Does she purposefully not eat the full meal plan, as it’s the meal plan? I know the structure can really affect some. Thinking of you.

As people have said, this is a strange time of year, I think it affects us all.

Thinking of everyone. I’m trying to have a huge clean and declutter of the house xx

@sum12luv yes our scenarios sound similar and I also work from home - which means I never get a break from things mentally as I would if I was in an office etc.

My DS wants to go to university next year 'to get as far away as possible from us'. What he doesn't seem to realise is that he may not get to university at this rate and we certainly don't want him to be 5 or 6 hours away as he is planning - especially with all his mental health issues and ED.

We also had a nightmare last night. He went to watch a show with some of his friends in it in the middle of the city and then proceeded to text us to say he was 'hanging out' and not to ring him. We thought maybe he'd go and get food or something (how naive).

We caught wind that he had spent £18 in Tesco and so alarm bells were ringing. I said to DH that I'd bet he had gone to get alcohol. Unfortunately we don't have any tracking on his phone, so had to get his friend to locate his whereabouts on snapchat. DH then went to try and find him (it's a big city but we were desperate).

Anyway DH then had a call from his other mate to say he was very drunk and needed to be collected. He was in a right state. Got him home and he proceeded to throw up everywhere and fell asleep on the settee. Put him in the recovery position and proceeded to watch over him all night.

I don't think he can remember any of it this morning.

He cannot moderate his alcohol whatsoever, we know that he is using it to mask all the other stuff that's going on, but we have no idea how to deal with it.

CAMHS have told us to 'back off' as far as his eating is concerned. But he is putting himself in real danger and we just don't know what to do anymore.

@Weightlossworried was it your DDs first week back? Maybe it has just been the transition back to college and studying / socialising that has made her especially tired. Hopefully she will engage with you a little today.

Thank you everyone so much for your replies. I am so sorry to hear about how tough things are for everyone.

@Weightlossworried how is your daughter doing today? By the end of the last school term my dd was falling asleep by 8 every night which was so unlike her. Can I ask how you have found the medication? My dd has been offered it but is currently refusing (obviously because she thinks she is fine). And thank you xxun

@Girliefriendlikespuppies they are trying to keep her out of a pediatric ward so she can go straight to a specialist bed. She does exactly the same as your dd, on the rare occasions she does eat, she inhales it.

@Pearl97 thank you xx

@unbuckle thank you xx

@10YellowTulips did your dd end up going into hospital?

@CuppaTandBicky how did you find the inpatient experience?

@Mummyoflittledragon thank you xx

@Weightlossworried has your dd had any bloods checked recently? I think I’d ask for some, she could be anaemic, have low b12 or vitamin D. All of which would make her feel tired and miserable.

Thanks for the good wishes, hopefully Rome will be good, I’m ready for a holiday!

@Holly221288 your dd sounds like she needs refeeding in a general bed first? To make sure she’s medically stable before moving her to a specialist bed. Every day she restricts food/loses weight the risks are very high to her physical health. We’ve had children end up in intensive care on this thread in very similar circumstances (I’m not trying to scare you but I get very frustrated when services are slow to push for hospital admission.)

@Girliefriendlikespuppies that is a real concern of mine, I understand them wanting to stop her going to peads but I am worried at the cost of it. And I don't really know at what point enough is enough. She is still eating, albeit a very small amount daily. Her ECG is ok. The main concerns are her bloods (although they aren't getting worse currently) and her BP.

@Holly221288 I agree with @Girliefriendlikespuppies if she needs to be admitted to a clinic, she definitely needs to be on a leads ward not at home. Her obs need taking every few hours, the idea is a great one, to send her straight to clinic, but her health means a ward admission is essential now. How little is she eating?

@Pearl97 It varies quite a bit, the last few days calories have been 700, 600, 475, 950, 900. Nothing yet today. We were at 300-500 a day so a little improvement. Camhs are literally telling me she is fine to stay at home currently so I’m completely confused

@Holly221288 the majority of us here know how confusing Camhs can be! Is she being regularly monitored. Do you you visit the ED GP or nurse? We totally get what you’re listening to them, as others have said though it is a very difficult stage and she should be monitored daily at least xx

@Pearl97 thank you so much for this. She is having weekly bloods and ecgs (sometimes at ED clinic but mostly at the GPs). And she is weighed once a week by our care coordinator (Dr on teams if she’s free). The other days meal support are here but they don’t even physically see her cause she hides under her duvet

I’d speak to the team tomorrow @Holly221288 and say you do not feel you can keep her safe at home anymore, she needs to be in hospital, if they won’t agree to admission take her to A&e (do this every day if needed.)

Children compensate to the point their vital organs can’t cope, the fact that her bloods are iffy now is a massive red flag.

What @Girliefriendlikespuppies said. Are the team that visit nurses or case workers? Either way,
once she’s medically unstable, she should be hospitalised. I think you will feel a lot more stable yourself when she is. I didn’t realise how stressed I wa until my daughter was hospitalised.

@Pearl97 and @Girliefriendlikespuppies thank you both. Their title is community support workers but I know they have both been HCAs. I will speak to the team tomorrow

@Holly221288 you’re doing the right thing. I know we sometimes sound like we’re telling people what to do, but we care and we know sometimes the team become almost immune to how poorly people are. I think if you air your concerns, they will have to document them, and whatever they say, you know you’ve done what you should. We will be thinking of you.
Just one more thing, remember to push as much as you can for a local hospital and local clinic. She is better staying in a local hospital while they find the closest clinic they can.