Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

Aww myrtle that's lovely update, well done to your dd.

Nomore my dd still leaves food, she also tries to leave the mouthful that has the most cheese or butter on. It's beyond frustrating, I'm not sure what the answer is, I do point out to her how ridiculous it is but it makes no difference.

My dd is still away, home tomorrow, I've missed her a lot but it has been nice to just look after myself for a week!

@Eyelashesoffire
we share on a need to know basis:

• school, close family and her closest friends and work (I needed a lot of flexibility when DD was inpatient and I had to work from the ward).

I have also shared it with some close friends - sometimes, we need to offload.

@Eyelashesoffire @Curlyhairedassasin has summarized(much better!) exactly how I approached it. DH has shared more widely.
My doing it on 'need to know' basis is that I dont want DD to just became her label of AN if that makes sense and she can move on from it

We have told some family (just the supportive ones), school have a vague idea but not the full story (we don't have a definite diagnosis even though I'm pretty certain what it is) there is a lady in the school office who is a terrible gossip so I'm giving info on a need to know basis, and two best friends. I worry about being judged (at the moment I couldn't careless but I don't want my son judged, some people say awful things). Best friends have been fantastic and there for us, there maybe more out there that could support us but the regular checking is kind and appreciated but I don't always have the energy to reply after I've fought the Ed through the daily meals.

nomore, DD always leaves a little bit. I think it is just to make sure that I don't 'win'. if that makes sense. I don't take the bait anymore and ignore (no idea if this is good advice).

@nomore DD almost 17 here. She leaves a scraping at all meals. I wont and dont tackle because I think she has ASD and changing gears for her is massive. If that amount was gradually increasing I'd push back but we have many more behaviours to tackle that need addressing so it's low on my list. (She cant prepare food, eat out, eat in front of other people except for family and v limited friends) I already know the ED is always there for my DD, leftover tbsp or not so this is not a hill I choose to die on

Does anyone have any advice for coping with prolonged episodes of distress/ screaming etc?

I feel pushed to the limits of what I can cope with this week. Trying all the usual soothing/ distractions/ calming techniques such as music, blankets, hot water bottle , sitting quietly with her etc and nothing is helping for any length of time/ at all.

TV etc makes it worse as she has severe OCD and has to keep checking what has been said / has she missed anything etc.

DD is either screaming and banging her head repeatedly / completing OCD rituals on a loop or curled up staring in to space not responding to anything. Pretty much the only time she’s not distressed is when she’s asleep. It’s horrendous to see her like this.

It’s been going on for over 2 years and feels worse than ever. She’s on maximum doses of her medications. Don’t want to take her for more than 1 short walk a day etc as her wfh is dropping and she’s dizzy etc on walking.

@Frankie291 that sounds exhausting for you all. None of those would work for my DD in her high distress days (she could only calm herself w self harm) One thing that I was given by this thread was putting ice in her hands. It meant her hands were occupied and the sensory shock/shift seemed to calm her eventually

@ReineDeSaba Thank you. Have tried ice in the past but not recently so will try again.
This thread feels like a lifeline. It’s so isolating trying to deal with this.

@Frankie291 I've found it a very lonely experience at times but there is tonnes of collective wisdom and a lot of understanding on this thread so hopefully you will get some more ideas on how to try to manage your DDs distress. We've all known those weeks w that horrid feeling of being depleted by it all, I'm so sorry you're having such an awful one.

@myrtleWilson thank you for posting (and creating these threads!). It's so good to hear how things are going.

Re telling people, I've got quite a small social network and I've pretty much told most people I'm close with, and people at work. I've struggled so much since all of this started, to the extent I think I'm fine and all it takes is a kind word, or even just bumping into someone who is kind at Tesco, and I'm in tears, so it just feels like it's the right thing to tell people why that is. I've not really managed to work properly since it started either, so same there.

@Frankie291 that sounds so distressing for you both. Is there an opportunity for a medication review sometime soon? Sounds like you've tried most things. Do you drive - would a drive out to the countryside or seaside help? How about massage or touch - hand or foot massage?

Finding everything so hard again this week myself. My Dd really just seems to hate me. I feel like we might have nothing left in terms of a relationship at the 'end' of this. 😢

I wanted to ask if your DC are taking any supplements (as in vitamins). DD was put on Centrum, Thiamine and some stuff early on in the refeeding progress for several weeks but is not taking anything anymore (and has not since the Summer). We are only maintaining around the 90%Wfh mark and her eating is very restricted (she is eating the same stuff over and over again and there is a lot of crap too). Just wondered if vitamins would be good and if so, do you give anything in particular?

We were prescribed this https://medicinemarketplace.com/forceval-soluble-tablets-30-tablets/?gclid=EAIaIQobChMIqtZ8JiZggMVDDntCh00OQsMEAQYAiABEgKE7vDBwE
Dietician said it's a good one

@Curlyhairedassasin I was told to give DD an A-X multi vitamin. I give her sanatogen complete A-Z multivitamin

Thank you both. Will get something like that!

Oops I think I mentioned the G word and my post has been deleted!
@Curlyhairedassasin forceval on prescription here too but the dietician said any children's A-Z multivitamIn and mineral is good. Generally the chewable tablet ones or capsules, as the "G-word (chewy)" ones don't have the mineral component.

@GrannyRoberts Thank you. I think I must have had a long day - I seriously have no idea what the G - word is. I need to google that in a moment 🙈

@Curlyhairedassasin it's a totally innocent word but mumsnet doesn't seem to like it. Starts with gum and ends with mies.

I am slightly disappointed now 😂

I was struggling with that G word too 😂

Can I ask about extinction burst and whether anyone has experienced this? My dd has put on about 2 kg over the last 2 and half weeks ish, and she is now around 92 ish wfh.

Along side this her behaviour has just taken a nose dive, she is now 'pouching' food in her cheeks to spit out, we have to watch every mouthful go in, or it's on the floor or hidden somewhere. Meals are taking a long time to complete, and she is avoiding coming here for meals or snacks for as long as possible. She is just horrible to be around, she won't look at me or acknowledge I've even spoken, she won't speak to me.

Is this a possible extinction burst? I really need to work out how to deal with this, it's so horrible to cope with, I realise it's because she is feeling terrible, but my natural mothering style is to nurture and soothe, and that is absolutely not helping at all.

@greydoor I can't offer any advice on this specifically. My DD was really horrible to us around the same WFH but she was in hospital so it's not quite the same situation, however she seemed barely able to tolerate our presence at times.
Now at 98% wfh and at home, she seems to fluctuate between almost manic episodes of affection where she literally clings to us and periods of utter disdain and frustration (she hit me in the face with her book earlier, and 20 mins later was climbing all over me on the sofa). I can't make head nor tail of it tbh.

Also been meaning to ask about fear foods - DD's adamant that she does not ever need to eat anything with added sugar again. Her view is that it's fine to eat the same "safe" foods over and over as long as her weight stays steady. Did others actively challenge fear foods, or is this something that comes later and more naturally? She certainly eats enough of a range of foods to have physical.health, but the mental side is a different story. She has demand avoidant traits and forcing just doesn't work, so I am not sure what to do! Maybe I need to be patient and keep on with the weight restoration and hope this resolves? Any advice welcomed. Those of you who.are further on in the journey, when/how did fear foods come back in?

During recovery I hardly challenged fear foods. Some people do. I decided to focus on weight gain and then weight maintenance. Using foods she could tolerate (which I added secret fats to etc)
I offered foods regularly and didn't comment when they were refused. Everyone else tucked in with gusto!
We are 2 years post weight restoration and most of those fear foods are now eaten. Not all. And I have decided to assume she just doesn't want to eat those foods, like everyone else.
Even this far into recovery she will suddenly surprise me and eat something I wasn't expecting. I remember the first time she ate bacon again. I nearly fainted. Today she helped herself to my left over rasher....
Patience is everything...
And forcing myself to back off and let her make her own decisions (once she had been WR for 18m and i realised my anxiety was making it worse!!!!).

Hi @GrannyRoberts we had a jar of fear foods/experiences which I think we did in Dd's second recovery. We didn't use the jar everyday as we didn't want to put Dd on the spot - but say twice a week she'd draw something out - sometimes it had to be done that day but other times it was more flexible. We tried to include behaviours as well as food - so one draw may have been "go to the beach and have an ice cream" but another may have been "buy some fruit that looks really delicious and eat it" - the latter trying to get her to bring spontaneity into her life as much as the range of food - if that makes sense - I guess it depends a lot on the parameters the ED has put on your Dd and how you socialise testing those.