Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

I know what you mean nan, I've taken functioning anorexic over non functioning. Your dd sounds like she's really trying bless her, I'm not surprised you're proud, I think out of all the kids on this thread your dd has been one of the most unwell. The holiday sounds lovely and something to look forward to.

Dd was assessed but unfortunately it was over covid times (hardly any face to face appointments) and it was done by deaf Camhs as she has some hearing loss (very minor now but needed hearing aids when young.)

The upshot was they said she was 'borderline' her communication issues they felt were linked to the hearing loss and they had no explanation for the multiple sensory issues.

It was very frustrating.

Dd and I both feel she is autistic but I'm not sure what a formal diagnosis would add now. Dd definitely finds it helpful thinking of herself as autistic and autism runs right through my family, my niece and nephew are both currently being assessed.

@NanFlanders your DD was so unwell and she's made amazing progress. I totally agree that the system is fat phobic, as is society of course, and unfortunately that is the framework we have to deal with. I had to have stern words with DH when he suggested we should maybe reduce some of the fats in DD's diet "in case she sees herself in the mirror at the swimming pool and gets upset". She's been going swimming perfectly happily, wanders round the house naked etc. For him to even be thinking that made me so mad!

You have been through so much and you know your DD better than anyone. She sounds so motivated to live her life now, and as long as she can keep that motivation maybe "functional anorexic" is OK, with the hope that in time recovery continues. With a possible ASD profile, the previous failure of FBT and her age, I can totally see that pushing too hard is going to be counterproductive. If she's anything like my DD once she decides to do something she'll bloody well do it! And if she's decided on recovery, she may do it her way, but hopefully she'll continue to make progress. Have you come across Door 2? I'm sure it will have been mentioned on here at some point. There are some interesting resources, including podcasts, around a more individualised approach taking into account neurodivergence.

@Girliefriendlikespuppies My DD has been assessed for ASD twice and both times found to have some consistent traits but not enough for diagnosis. I am certain that she will be diagnosed at some point (traits from a very young age) and the CAMHS ED team have also recognised this and make accommodations. The Family Therapist recommended a book by Cathy Wassell "Nurturing your autistic young person" which I gave bought and am finding it so helpful! So much about my DD clicks into place when viewed through that lens.

Is anyone hot on wfh calculation? DD is 148 cm and 32kg, I’ve worked this out as 82%, she’s static on weight since it was last checked a month ago but has grown taller.

losing the will, frankly.

@Glitterfarti I do have the calculator on my phone but need a rough DOB (month and year) to calculate as well.

@Curlyhairedassasin, I’ve sent you a pm. Thank you!

@Glitterfarti gah! I sympathise! Isn't it awful when we begrudge our children growing taller!! 🤣
@NanFlanders your DD has come such a long way, you must be so proud of her. Hope the autism assessment feedback will be helpful tomorrow.

Thinking about autism assessments during an ED, if your DC wasn't diagnosed as a young child - I've got 2 questions for you all -

1. what did you see in their childhood that now you realise were autistic traits?
2. how do the assessors differentiate between the rigidity/ sensory/ anxiety issues of the ED and autistic traits?

Strange, I didn't get any. Can you resend?

@Glitterfarti I messaged you back. Let me know if you didn't get it.

@Eyelashesoffire We got DD's formal diagnosis yesterday. Never for a moment considered autism prior to AN, but in retrospect there were a lot of signs. As a small baby DD had appalling colic, which some people do put down to sensory overload. Also wanted to be held all the time - which is odd because now she can't stand a hug - though does like her feet squeezed. As a very young child, she did play with others, but was often described as ‘bossy’, because she only wanted to play games that she had decided: she did not want to play games unless she had decided exactly what would happen during them, preferring to be alone rather than play games where she didn’t know what was going to happen. When DD was younger, she found it very hard to play fantasy games, and much preferred games where she could mimic a figure that she had seen in real life, so she would play mums and dads, hospital, teachers. She recounted that she read by herself every day for about three weeks in primary school, because she did not want to play ‘fairies’. As she had never seen a
fairy and did not know how to act like one, the thought of joining in on this game was upsetting!

Also, she did have special interests - she shared some of them that she judged were 'normal' - guinea pigs, Hamilton (the musical): but there were some that only she and her brother knew about because she judged them 'weird' - gym equipment (though not a gymnast) and queue times at Alton Towers, even when we weren't planning a trip.

@greydoor yep it’s worse than managing a toddler. The independence dd once had has completely disappeared. Constant supervision and Molly coddling and no end in sight.

Good question @Eyelashesoffire .

We are waiting for a referral for DD too. School is on board as they started to wonder themselves.

I didn't seriously consider an Asd referral before the AN. DD1 has severe ASD and is so different to DD2 (the one with AN). But thinking back, there were a lot of issues. She didn't like socks, she went through a phase where she even rejected shoes. Clothes felt often wrong to the point where she could only tolerate one pair of trousers and thirt. I had to buy copies of the same. people must have thought that DD is a poor kid with only one pair of pants and one t-shirt. She found friendships always a bit hard and was never that outgoing and never had many friends. social communication differences became really obvious now she is older esp when she is expected to do certain things for herself - like asking a question in a shop, or telling someone in a cafe what should would like to drink. In the past I did that for her so it wasn't an issue but it's obvious now that her social communication is really off. She cannot talk to strangers. In the ED clinic she just looks at her phone and doesn't engage much either. her eye contact is not there. She has some special interests but not that intense like some others (DD1'd special interest rules our life and she takes it to a completely different level so I never really considered DD2 to have them if that makes sense). She is very rigid with many things in her life if I think about it. She did have certain OCD traits when she was younger and was under camhs but discharged as quirky but ok.

Strangely, food only became an issue with the AN, never before.

I guess it is a blessing that the waiting list will be long. hopefully, by the time DD gets an assessment, the AN will be much less prominent and we can get a clearer picture.

Socks! I'd forgotten toddler Dad's extreme hatred of socks! 😂

@NanFlanders how does your DD feel about the diagnosis? I know of a couple of kids who have been diagnosed in their teens (girls) and they felt it helped them understand why they sometimes felt different. I hope this is the case for your DD.

I would never have said dd had signs of ASD before AN, unless she was a champion masker, but looking back there are little things, mainly social.

Struggling with friendships due to short burnout time. Couldn't stick at anything - Clubs/classes were dropped after a few sessions. Preferring to play alone and make up very elaborate scenarios in imaginative play. We would have lines or groups of animals/cars/lego going all around the house that we couldn't move. I had no idea this was a sign until my friend recently posted photos of her autistic dss elaborate toy arrangements. Changes in routine caused upset.

I just put all of the above down to her personality as they didnt really affect her too badly. I'm very introvert and definitely have the burnout issues.

AN has seriously exacerbated her social issues and burnout time. She can't go out alone, can't talk to strangers, can't even answer the door to the postman. Strict routine is vital - particularly aroundfood. She's become very sensitive to noise.

Despite being WR she still has all these struggles. I just hope that by maintaining a good weight they will start to subside.

@NotAllGood I think she feels validated really. She sent us a really thoughtful essay about a year ago setting out all the reasons she thought she was autistic, and since she had her assessment, she's kept asking "Am I autistic yet?". She's also been texting all her friends to let them know. Having said that, she really doesn't want me attending the follow-up workshop, so who knows?

That's good you got the diagnosis Nan, your dd sounds so similar to mine. My dd had sensory processing difficulties diagnosed when she was about 7yo as it got to a point that finding any clothes for her to wear was near on impossible 😬

Just popping by (sending love) to say Hope Virgo is holding another ED March in London on 27/4. @NanFlanders and I attended last year and it was great feeling of solidarity and lovely to meet in real life

https://www.tickettailor.com/events/dumpthescales/1107791

So we've had our assessment which was physical health and we already had bloods and ECG done at the GP the lady we saw was a MH nurse and we were in there 1.5 hrs
She said the next step is a MDT meeting to decide the next plan

Her advice is NOT to calorie count but to eat 3 meals a day and 3 snacks a day
Not to talk numbers at all in front of daughter

And she's thinking it's not an ED ? Saying it's more disordered eating? But I'll get a call next Tuesday after the MDT

Daughter was fab and answered all the questions well
I didn't realise she thought she was fat and that she has trouble sleeping
I thought because she sleeps in and likes sleep I didn't think of her not being able to get to sleep for ages and over thinking etc

They are sending over meal plans
Be interesting doing it without calorie counting ?

She said her WFH is 91.7 and if it was 90 she would be off school and 70 is admission

Just been for lunch and she's managed a whole lunch pizza bar one bite

She said it was important to not talk food at all when eating just do something like chat or talk about fun things and just gently say eat up and limit to 45mins and no numbers at all

@myrtleWilson Thanks for the link. I'll be there! If anyone else is up for it and would like to meet up, do DM me and I'll set up a WhatsApp group. It really was a great day last year and I left feeling really inspired and positive.

Hello, is it ok for a newbie to post here? )I don’t want to push in if you are established as a supportive community who all know each other well already etc)

Hi @Wallrat you're very welcome to post. Sorry you find yourself here 💗

@Wallrat We are a support thread for all parents and carers of YP with eating disorders. Please post if you need help/support or just need to vent!

Thank you both. I fear I’m at the start of a difficult path with my 13yo. I have been worried about her eating for a while. We don’t have any scales (because I had very disordered eating in my teens and haven’t had any since getting rid of them in my 20s) and I don’t know what she weighs. She is definitely thinner than she was, however, and I think she must be losing weight as I’ve just discovered she is only eating one meal a day, and she doesn’t always eat very much.

Had a call from school just now - I’d asked them to keep an eye on her eating as I can see from the app that she was buying lunch but was not sure she was eating it - she is not eating it.

I feel lost and guilty and shaken. I’d be really grateful for any pointers to the best resources to help me think about this or how to start having a conversation with her in a way that won’t make things worse.

We had a conversation before xmas when I was worried about her not eating breakfast but I was reassured as she said she is not hungry first thing.

And I kept close eye on her eating over xmas holidays and actually I think she was eating normally. So I was thinking everything was fine - and she’s clearly a world away from the horror that so many of you are experiencing with your DC.
Perhaps she doesn’t have an eating disorder at all. But I can’t even think straight right now.

I’m trying to get a referral to the school early help mental health service. And I’m going to try to talk to her about this when she gets home. Should I be taking her to the GP? I don’t feel like our GP is all that great.

My heart goes out to you all.

Please go and see the GP. You need a referral to the Eating disorder service and probably other checks (bloods to check electrolytes), ECG, etc.

Do you have any idea how much she is currently eating in calories? We were always told to attend a&e for checks if DD does not eat more than 500 cals per day for 2-3 days.

Usually, the treatment is Ftb (family based therapy where you support eating) which usually consists of 3 meals (breakfast, lunch and dinner and 3 snacks in between). If she has been restricting a lot recently, she may need to have foods re-introduced gradually under medical supervision to avoid the so called re-feeding syndrome (DD was impatient in hospital for almost a month for that after an emery admission after a short period of intense restricting).

Also, if she is not eating (or just one meal), you should stop all activities and I would not let her attend school.

Depending on how much (or little) she has been eating I would suggest to ring the GP for an emery appointment tomorrow morning or a&e if she has been restricting heavily recently. They will do ECG, bloods etc.