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

[Curlyhairedassasin]

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

No counselling myself but think it’s something I’ll need to look into.

@Cantfindthewordsddstruggling sorry to hear of your present difficulties. I agree it would be beneficial to get some counselling/support for yourself.

Has anyone had experience with low body weight leading to muscular skeletal pain? DS has been in bed so long now that even sitting up for short periods is causing him pain.

I’m at a loss as to how to help him, there doesn’t seem to be anyway to move forward.

@WoodenTrain sorry to hear about this added complication. We haven’t had this problem, but I would seek medical advice. Also, please be aware that if he is at a low weight for a prolonged period of time he is at risk of losing bone density so if you haven’t already spoken to a medical professional about this, then please do so asap

@WoodenTrain I know that osteopoenia (and ultimately osteoporosis) are significant risks with AN)). My DD was prescribed calcium tablets - could you raise with your DS's team?

Wooden how much is he eating and what's the current wfh? I think if sitting up is causing pain I'd want a medical admission for feeding/monitoring.

What are the team saying? Is a specialist inpatient unit an option?

@WoodenTrain that sounds a bit concerning. Sorry things haven't improved, it does sound like the team need to review things and change course if possible.

Sorry you are having this added worry @WoodenTrain . iirc, his WFH had dropped again recently to 73% or so? Has he been seen about this pain yet? I know he resisted treatment in the past but would he come to hospital with you now? From the posts it sounded like a not very proactive team involved and you need a lot more support esp with his already low weight dropping again?

@WoodenTrain I’ve been thinking about this and although i don’t recall muscular pain I remember that when my DD became seriously unwell she said that everything hurt. This was the catalyst for change. At this stage, if she had not agreed to intensive day treatment, I believe the psychiatrist would have sectioned her as her bloods were off, ECG was abnormal and BP was low. Thankfully, she agreed to treatment as life had become so miserable for her.

Thanks everyone. Yes, he is around 73% wfh and eats one meal a day plus a small amount of snacks. I’m currently trying to get him a review with the GP to assess the pain. It seems to be back pain from what he has told me.
He’s still refusing college, so they are going to request an emergency review of his EHCP. I keep saying though, as it’s quite obvious to me, how can anyone focus on sitting at college doing maths and English when they are starving, cold, and in pain. His physical health needs addressing first.

Where is the ED team and psychiatrist? Have you considered attending a&e for all the physical tests or would he refuse? I think he needs a whole lot of checks. ECG, bloods, etc. I'd rather go there than seeing the GP.
Would the team not consider a section if he is not cooperative? You seem to be getting very little support.

I agree with Curly, I would take him to A&E for all the checks, ECG etc. They won’t be able to help you long term but they will be able to see if he is in immediate danger and you will have a set of obs for whoever you see next. I remember being told that DD needed at least 500 cals for basic metabolic functions even when sleeping so if he is only having one meal a day, unless it is very energy dense, then he is in serious deficit.
@WoodenTrain your DS needs intensive treatment to start recovering. It’s almost certain that his pain is the result of malnutrition and needs to be addressed before he suffers lasting damage to his organs &/or bones. Unfortunately, you can’t make him eat and he has to want to recover. But you can make decisions for him while he is too unwell to make good decisions for himself. And you need a good eating disorders psychiatrist to guide you, monitor his physical health and section him if he is at risk. Although you have to be very unwell to get help on the NHS please know that help is available for those who really need it. It sounds very serious Wooden Train. Thinking of you and wishing you strength to find the help your son needs.

@WoodenTrain. Is there any way you could take someone with you to A&E to advocate for you and your ds and push for admittance? At this point, it feels as though you get beaten down every time you try to get somewhere with him.

Found it today that DD is purging at school. it's her lunch. She does not do it at home. She isn't allowed the bathroom after eating.
Did others have this issue in school only? Any ideas about a work around? I was wondering if she should skip lunch in school is something to suggest (and then a catch up lunch after she comes home). It would mean she only has breakfast and morning snack until 4 but I could ensure all meals are eaten that way.

@WoodenTrain how did today go?

It’s difficult because he is basically refusing all interventions. And no one will do anything because he has capacity to make his own decisions.

ED team are currently discussing whether or not they are going to push for bloods. Which they don’t want to force unless deemed absolutely necessary.

He has agreed this evening to go to the GP on Monday.
And he did eat a sandwich today (in addition to what he normally eats) so that’s a tiny bit of progress.

I do find it very frustrating. The ED team and Psychiatrist are there in the background but currently taking a hands off approach. I think they are trying to slowly win him over into wanting to engage and fear forcing him will be too traumatic and have the opposite effect. My understanding is they won’t intervene unless DS is flagging as red on the MEEDS checklist and he’s currently only amber. But having said that when he was red nothing much happened either except daily phone calls to check his intake and any other symptoms.

@Curlyhairedassasin
I can only talk from experience with my dd and skipping lunch. For me this would be the last thing I’d want to do tbh because the first sign of dd’s ED was when she decided not to eat lunch at school from September last year. At first she came home ravenous and ate her lunch late then dinner at maybe 8/9pm or later if dancing. Then that tailed to dd not being hungry and the restriction escalated.

There is also a risk that in no longer expecting your dd to eat lunch you give into the ED and if this is the case, the ED may see it as a win and perhaps take that as a sign idea of purging more. Idk as I don’t have this issue with my dd. She would never make herself vomit as vomiting brings on a seizure (she has reflex anoxic seizures).

but how can they assess if he is amber or red without all the tests. I would really try to to convince him to go to a&e. Sorry things are so hard.

thanks @Mummyoflittledragon Our ED isn't actually new. We are 2 years into treatment and DD is only 13. I have arranged an appointment with the ED team for Monday to discuss. Vomitting was never an issue. it totally took me by surprise when it came to light today.

@Curlyhairedassasin Good luck for Monday. Gosh, since she was 11. That’s so little. ❤️

@WoodenTrain At what point would your ds be considered not having capacity to make those decisions? I’m figuring he has no insight into just how ill he is.

Yes, it baffles me as to how they can determine whether he’s red or amber on the MEEDs checklist without actually doing all the monitoring.
I have also argued the issue of capacity with the charge nurse at hospital previously. I don’t believe he does have capacity.

I’ve seen something about an intensive treatment program at the Maudsley in London that takes referrals from all over England. Does anyone have experience with this?

Wooden that sounds really scary, if you can't get him to a&e I'd call an ambulance.

He sounds so ill 🫤 I agree re capacity, sectioning him and getting him in somewhere would be what I'd fight for.

He sounds like he's dying if it's painful just to sit up.

It terrifies me how useless the ED services are, 'a hands off approach' WTAF?! What and wait until he collapses/dies?

@WoodenTrain Agree with girlie get him to a&e and if he refuses, call an ambulance. They will come. we had the ambulance out twice and the second call out resulted in administration to the high dependency ward. The have mobile ECG machines etc and can do a lot of the basic checks at home but i really would not waste time in trying to get him accepted in some treatment programme. he sounds very ill (more more than DD when she was admitted to the HDU and the doc told me she was coding red).

Curly, we were always told that it didn’t matter when she ate as long as she ate her full meal plan so I guess if you can fit it all in in the day then that would work. Blood sugar levels will drop if she has a long gap in the middle of the day without anything but I figure that would be better than purging as that comes with its own serious risks.

@WoodenTrain I believe the intensive Maudsley treatment is very good and adopts a more person centred approach, which may be what your son needs. However, I don’t think you can wait to get this in place as it will require a referral from your current ED unit/psychiatrist and assessments, which will take time. Could you do BP/ pulse etc yourself - standing and sitting - and contact his team with the results.
Is he faint when he gets out of bed?
I’m sure you know this already but you need to be aware of refeeding syndrome. We needed daily monitoring including daily bloods once 3+3 was established (and initial meal sizes were small).

@WoodenTrain my DD was treated at the Maudsley by the ITP team, you would need to get your GP or ED team to make the referral (I don’t believe you can self refer now). The key is you have to get to Denmark Hill where the team are based. They turned everything around for my DD - refeeding without therapy simply didn’t work for my DD despite what the NICE guidelines say, she needed both at the same time. The young person, at some level, has to want the help as the rules at ITP are strict (they have to be). I believe there are other day programs in the country but I don’t know where. I hope you find the right support. Feel free to ask me anything that might help xx

trigger warning- ⚠️ does anyone else regret having dc purely because of this hell that mental health struggles and AN has put their dc through.

sorry guys- I’m safe but not in a good headspace at the moment. Feeling like I’ve really failed as a parent.