Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Sending hugs Curly.

@Curlyhairedassasin I believe you have done the absolute right thing today - your husband needs to know that the ED thrives on secrecy and manipulation - it is triangulating you, your DD and your husband and he is being ‘played’ by the ED - put feelings to your DD to one side, she is obsessed by the ED and it will do anything to avoid food. We felt that DD was possessed - it was not her and we had to learn that fast.

Oh am so sorry you're having to deal with all of this - stressful enough - without the added issues of a gaslighting wetwipe of a husband to ignore deal with. You've done the right thing and as all of the people who have ever popped on this thread as adults reflecting on their experiences as very ill children say - your daughter wants you to fight for her and will thank you when she's able to do so.

I am pleased the tests were OK. You absolutely did the right thing..
Your DH is deluded.. she will not snap out of it. She isn't making any choices..her ED is in complete control and he is enabling it.
As a parent it's so hard to get your head round. But has he even tried? She is not going to get better unless you present a united front or at the very least he stays out of the food management..he is undermining your attempts to help her get better and the ED loves him for it
Can he attend with you on Monday. He needs to hear it for himself maybe. Accusing you of abuse is unbelievable.
Has she eaten anything else today? Other than her breakfast?

Again I agree with the above and was going to say that your husbands needs to make the appointment on Monday.
Use the threat of a&e whenever she refuses to eat from now on- and follow it through.

she had 2 dry crumpets with a glass of milk and quite a bit of fruit.

Yes, he is coming on Monday. Though we tend to end up arguing on front of staff when we are both there. 🙈

I hope the head of the service can talk some sense into him.
She's had another day of around 800 kcals (being generous)
How does he explain that being enough?

It was only when dh came to an appointment with us that he realised the severity of DDs illness. It was her first appointment and she was admitted on the spot.

he needs someone to spell it out I guess. The head is very firm and from the straight talking, no-BS taking kind. I hope we make progress then.

At the point he accused me of being abusive I'd have shown him the door tbh curly. I think you might need to speak to staff separately to him,
and explain how much more difficult he's making this.

I was also going to say could you warn the doctor about your DHs attitude so she/he can make it plain? Before you arrive (email/ phone call)

@Curlyhairedassasin I’m sorry to hear your DH’s reaction, it may be fear and / or ignorance. It may help to show him a video about the illness - this one is for an older sufferer (fell I’ll at 15) and I will send a separate link for a younger person - https://m.youtube.com/watch?v=MprkgCuCu80

@Curlyhairedassasin the story of a younger sufferer - https://m.youtube.com/watch?v=I0ES3B1b14c I hope this helps your DH understand.

Curly I'm so sorry your dh is treating you like this. Having no knowledge of how to cope with ED is understandable when you are new to it but I'd find it very difficult to forgive and forget being accused of abusing my child. He's crossed a line there.

I'm glad you've got an appointment soon and hope you get some good advice and I really hope it opens your dh's eyes to what a serious illness ED is. He needs to either muck in and help with dd, or he needs leave you to manage all her meals while he supports you in other ways.

Any pointers as to what I should ask for today (other than the obvious).

We had 2 eggs for breakfast. Nothing else. DH and I are fighting again. He send me links from medical journals about personality disorders (he diagnosed me over the weekend with a number of those 🤯).

Can I also ask how often your children get their bloods and ECG done? We had it finally done in a&e at the weekend but the paediatrician there was surprised it was not done sooner or more regular (we have been under the ED clinic for almost 6 months). Is this something which needs to be done more often esp if eating restrictions escalate?

Have any of your children tried ADs? This was mentioned to us at some point and I wonder if it is worth a try but DH says he will not allow this. Not sure what happens if one parent wants to consent to treatment and the other is dead against. I think his veto will override my 'ok'?

The ED team should determine how often bloods and physical obs are done, while she's restricting heavily id think monthly at least. Ask them to look at the ecg and blood results as sometimes the results can look okay to Drs not trained in EDs when actually they are not okay iyswim.

I'm sorry but your dh sounds awful and he is gaslighting you. I would hope his behaviour at the meeting raises red flags with the professionals but ultimately you need to ask yourself if the relationship is salvageable and if not make plans to separate.

If he is obstructing treatment and going against medical advice this is a safeguarding issue and will be treated as such.

If I were you I would speak to one of the nurses separately to him and explain how difficult he is being, how he is trying to convince you this is your issue and how he is enabling the ED which ultimately is risking your dds life. They maybe able to put you in touch with a domestic abuse service to support you.

I'm so sorry you're going through all this.

Curly, My dd had the full obs ecg and bloods right at the beginning before her assessment. She's had bloods done around every 3 months since. Blood pressure and weight was weekly but as weight has gained it is now longer in between appointments.

I write out a list of questions as things arise to hand over at appointments as I tend to forget a lot once we're in the room.

My dd won't take meds. She's 17 and it has to be her decision. I'd have no issue with them as I've had them myself but she googled that a side effect is weight gain and there's no reasoning with her.

I do hope todays appointment shows your dh what a serious illness your dd has. I agree with Girlie that if his behaviour carries on you need to think about separation. Although this could have issues such as your dd wanting to go with him if he's not going to to insist she eats. An awful situation for you to be in. I'm so sorry.

I am probably too late but what you really need from this meeting is for your DH to have the seriousness of the situation rammed home.
He needs to buy into the treatment or leave you to do it alone without undermining you.
I would also hope that an experienced ED clinician will treat his behaviour as a safeguarding issue.
He is risking your daughters life.
You need to know what the escalation steps are in her treatment. If they want you to carry on trying to treat her at home you need more support. What can they offer. Can they liaise with social services to get more help with your other DC? Can they offer meal support in your home?
If they are recommending an in patient route what does that look like in your circumstances? What are the triggers for admission?

And yes whilst she is this ill I would think monthly bloods and ECG and weekly weight and blood pressure, HR, postural drop etc.
Please let us know how the appointment goes.

And I would ask about olanzapine. Not sure ADs are going to be much help as her current issue is purely the ED being in complete control (backed up by her father) making her violent and vv resisitant. For some Olanzapine can help with that almost immediately (certainly with my DD we would not have coped without it).

I think the doc talked some sense into DH.

We walked out with a prescription of Olanzapine. Hopefully that will do the trick to tie us over.

for those who has been on Olanzapine, how helpful did you find it and how quickly did it work?

My DD started on 2.5mg a day. She took it all in the evening as it made her drowsy until she got used to it. She then increased to 5mg per day about 4 weeks later as she had grown used to it (and gained weight so needed more dosage!). She stopped taking it 6 months into full recovery (ie 6m after getting to 105% wfh) on a phased basis.
It worked immediately. The following morning I got breakfast into her in 40 mins as opposed to 2 hours and several melt downs.
It doesn't act like that for all tho. It can also increase appetite (a good thing) although DD didn't experience that. She did sleep an awful lot better which helped everyone.
I hope it helps your DD.

Dd took hers with her evening snack at c 8.30pm. Much later and I couldn't get her up in time for breakfast. Also makes sure she's eaten her plan before taking it each day to start with as it can make them v sleepy v quickly. Leaving you with uneaten snacks!!!
Tonight I'd just concentrate on getting the meds in tho as well as as much food as poss.
What did they say about ongoing monitoring?

BTW it didn't solve the issue. Its not a magic bullet. We still had massive meltdowns and difficulties for 6 months but it def helped. I'd describe it as 'taking the extreme edge off'

we only got 1.25 to start with with the view to double up to 2.5

She had it this afternoon (massive battle). She just had some dinner. Nowhere near enough but I didn't get beaten up so that is a plus. Will see what happens in the next few days but it gives me hope when I see it worked for others.