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

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

I'd ask them who is going to help @WoodenTrain how on earth is he going to begin recovery without professional help. The ed team have been in contact almost daily and wouldn't have sent him if there wasn't a need, he has to be red on the meeds checklist.

Woodentrain, I know it would be incredibly hard to do, and it’s hard when you’re being told he’s medically stable… but I do think the advice here to refuse to take him home is right. It’s only delaying the inevitable, and your ds really does need to be in hospital.

I agree it will be so so hard. When dd was admitted I begged and begged them to let me take her home but the best thing they could do was make her stay in hospital. It was the start of her recovery.

I haven’t posted for along time but my DD has had an ED for the last 3 years during which she has been sectioned 3 times- currently still under. if you have any questions I have some experience @WoodenTrain

In our case the message from the NHS was that our DD’s obs were typical of someone with an ED. We were sent home. She was so unwell by this stage that we sought a private opinion and the psychiatrist worded it much differently telling her that she was very unwell and unless she gradually increased her food intake she would be hospitalised. That she would not let her die and would section her if needed. She went through all the stats on how dangerous AN is and how it has the highest death rate of all the mental illnesses. How once the weight starts coming off it can be v difficult to stop. How stopping weight loss is like turning the titanic. It was brutal but honest. The private psychiatrist then started the ball rolling by making an urgent NHS hospital referral. Very different urgency to what we had experienced in the NHS. I remember the agony of being told that our DD was too unwell for Day Unit treatment but not underweight enough for inpatient admission and we would therefore have to take her home until a bed became available or she became life threateningly ill. I would sleep with her for fear of something happening during the night. Woodentrain, like my DD, your DS needs intensive treatment to recover and unfortunately it sounds like you will have to fight tooth and nail for it. Thinking of you. X

And this is why EDs have the highest mortality rate out of all the mental health disorders.

It's actually unbelievable.

I wouldn't take him home, ask to see the paediatric consultant and explain you are worried your son will die if you take him home. He is not eating enough and the ED are talking about sectioning him.

At this point he needs to be in hospital for monitored refeeding with the threat of an ng tube if he doesn't stick to the meal plan.

Martha’s Rule gives you the right to ask for an emergency second opinion if you feel that your child’s condition is rapidly worsening OR they are not getting the care they need.

tThe rule is being “rolled out” so might not be at the hospital you are at, but it might be. All strength to you.

We’re home. I’m exhausted, tearful, and pissed off. I told them I had concerns and didn’t feel it was safe to discharge him. They basically said there was nothing physically wrong with him and he was systemically well so there wasn’t anything they could do for him.

I asked them why they thought he was well when he was flagging as red on the MEED checklist, we were sent in because he was flagging red, and he’s still flagging red. They said again that his BP/heart rate are consistent with someone with an eating disorder but as his bloods are normal he’s systemically well. They would only admit if bloods were deranged or ECG abnormal.

Then they were just like what do you expect us to do? He just needs to increase his oral intake and we can’t force feed him, he has capacity. In the end refusing to take him home wasn’t really an option. He wanted to leave and they wanted him to leave and they said he has capacity so I wasn’t sure what other choice I had.

Just feels like it was a complete waste of time and it was potentially very damaging to DS. It took days to get him to agree to having BP and pulse check. Can’t see him agreeing to that again anytime soon. And really who could blame him?

You are between a rock and a hard place. We were in the same place last summer. If you haven’t done so already then the best thing you can do now is to get yourself some psycho education. BEAT, FEAST and the Charlie Weller trust run workshops, which are also a form of support. The BEAT workshop is based on a book called Skills Based Caring for a Loved One with an Eating Disorder.
At least your ED team sent your son to hospital for checks so you know they have your back. Are they continuing with home visits? They may be able to get him to do stuff that you, as a parent, cannot.

Did you speak to the Ed team whilst in hospital?

@WoodenTrain - How frustrating. You must be reeling. Pulse that's 'normal for someone with an ED' is NOT 'systemically well'. Do you know what his pulse is? If it's under 60 bpm he has bradycardia. Our DD was always admitted if it was 45 or under as there was a risk to her heart. You can just take it on a phone if he'd allow that. It just seems like they are waiting for your poor DS to hit crisis point. Hugs

@WoodenTrain What an awful experience, I’m so sorry. Is your son above the Paeds age cut off?
I found with DD we had a very different experience when assessed by Paeds compared to ED Doctors.
Your son almost certainly does not have capacity to decide how much he eats and drinks so they are wrong on that front..
My daughter was sectioned whilst on Paeds ward and then transferred to a psychiatric hospital ED ward so I haven’t had experience of the process of someone being sectioned from home. I imagine it would involve ambulance and police if needed. It was an extremely distressing time , but it had to happen to keep her alive which is what I kept saying to myself.
I guess you’ll be speaking to ED team . I hope they can move this forward today.
Sending strength and solidarity

@WoodenTrain I’m so sorry that they sent your DS home when obviously he isn’t well at all. Are you u see CAMHs?? It was CAMHs that referred my DD to hospital on her first assessment as she wasn’t well at all and they said she would be there for 2 weeks through the refeeding process and if she didn’t eat in hospital she would be fed through a tube. Her Dr on the ward she was on went mad when she found out A&E had sent her home the week before saying she was fine when she wasn’t and her herself has put a complaint in as she said this had happened several times over the week with ppl in the same situation. What have the ED team said about them sending him home x

Message me lovely, I'm happy to help x

Just popping on to say the ED March today was really powerful and full of inspiration. An ask of speakers was for us to raise our voices in the run up to the general election - ask candidates when they knock on your door what they know about EDs and the too often poor treatment sufferers receive.
James Downes was v good speaker - turning the words about ED onto the treatment providers. He said 'Stop starving people of the care we need, stop restricting them from their ability to recover, stop weighing up who deserves treatment'
For anyone on social media search the #dumpthescales for photos and more.

@NanFlanders and I marched for all of us, past, present and future posters on these threads and personally, it was lovely to celebrate with Nan the progress our girls have made since we last met.

@myrtleWilson @NanFlanders thank you

@myrtleWilson @NanFlanders thank you so much for being our voice today 🙏🙏🙏

Lovely to see @myrtleWilson today. What was also lovely - apart from the brave and inspirational speakers - was the number of mums marching with their daughters/sons who looked like they were now doing well. Recovery is always possible, and although DD still struggles sometimes, she is a different girl from last time we marched. #DumpTheScales!

Agree! Thank you x

How is everyone doing? We have a busy week ahead, 3 appointments this week for dd.

Hi @Cantfindthewordsddstruggling we’re doing good today despite DD having bad stomach ache but she’s pushing through. Hope all your DD’s appointments go well.

can I ask if anyone can help since my DD came out of hospital CAMHs have said she needs to mimic bedrest like in the hospital, can I ask does anyone know how long the expect her to do this for is it till her percentage that CAMHs do gets to a certain percentage or will they do it till she gets to a certain weight??

mumofellie my dd was allowed to introduce a half hour walk once she was at 85%. As long as she was eating her full meal plan. On the week she didn’t eat it and lost weight, it went back to bed rest

@WaitingForMojo ow wow really looks like my DD with have months left of bed rest then which isn’t going to go down well as she always has to be doing something. Does anyone have the method of how they work out the percentage as I know what it was then they admitted her but don’t know what it is now. (It’s only been a few weeks so know it won’t have gone up much) just want to know how to work it out and how far she has to go

The height for weight charts are on the royal college of paediatrics website.

Dd was on bed rest for nearly 3 months xx

It may be different for your dd though, I don’t know.

My dd was allowed to move between bed and sofa, but not allowed out initially, other than once a week to the supermarket in the car.

She was then allowed to do her art class for an hour a week if she was driven to the door.