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.

Thanks for the well wishes…

No great advances with CAHMS. They refused to diagnose without blood pressure and pulse despite the fact that they said they’d take the referral. Lots of fluff, no real advice. Extended appointment in 6 weeks or less, which must include obvs.

The question remains is it ARFID, anorexia or disordered eating. Dd is somehow counting calories but not to loose weight. She does have a distorted body image because she thinks she’s the same weight as her friend, who is 8 kg heavier. And how much does this matter so much if delaying diagnosis delays treatment?

So a short phone call with the private therapist tomorrow. The good news is I think dd might be ready to engage. She got tearful today and didn’t want me to leave her to speak alone to the therapist. Dh insisted that it should happen though. Dd still had some level of separation anxiety with anything unknown.

@Mumofellie Idk if your dd will grow again. I know someone, who had an ED and grew in her late teens but I think from what she said that her ED only shortly before the growth spurt. Despite skipping school lunch since September and steadily reducing, dd (almost 16) has grown a little this year for the first time in years. My dd was one of the taller girls in primary then they all caught up and a lot overtook her.

@Mummyoflittledragon hi sorry your appointment went a bit rubbish did they say why they wouldn’t do bloods or take pulse etc surely that’s the first thing they should have done. Is this the first time you have seen them??

ye I know that about DDs height I was just wondering if others had grown during this stage but suppose everyone is different so some will and some won’t.

we have another app with CAMHS on Thu and I’ve a feeling she’s going to maintain again as she’s not willing to put anything up and if I do she said she won’t eat it so though week this week

Hi all, sorry I am not fully caught up with the thread, it's been a busy time. Sorry to the newbies but welcome, you'll find lots of support here. To all of you and your dc struggling you have my virtual support 🤗

I'm looking for some advice if anyone can help please. So dd has been wr since January, is in a good place physically and mentally and is leading more of a normal life. Diagnosis is anxiety, there is still some questions around arfid and we're having cbt along with fbt weekly.
So before this all began ds would only eat pasta, rice, spaghetti, cheese pastry's, beans, spaghetti hoops, potatoes and potato waffles, occasionally sausages. When he stopped eating his safe foods he started having chicken nuggets, he never really enjoyed them but wanted to try hoping it would become easier. We're happy for a slight variety so we've kept them in his meal plan and the clinic aren't sure if they'll be there forever but he's been complaining lately about the texture and how he struggles to swallow it and it can take up to 2 hours to finish the chicken. My concern is if it's Arfid and we're pushing something that he does (now well) struggle with, or is the ed/anxiety trying to manipulate me? Ds is pushing himself really hard as he knows it's what he needs but he gags and almost vomits and that's what he was like as a toddler when he stopped eating meat.

Thanks. It is dd who’s refusing obvs because of her seizures. The no 1 trigger for them is medical settings and she was traumatised by a doctor at A&E in March, which led her to stop eating. The doctor told her she should have grown out of the seizures by now (they’re cardiological, not neurological). If she has another seizure in A&E she will stop eating and she will then have to be admitted to hospital, which will be particularly awful for her.

Reflex anoxic seizures are listed by the NHS as something toddlers can get and which children grow out. This isn’t the case. I know a woman, who started having them as an adult and there is a case study online of an airline pilot having them and being fitted with a pacemaker in order to be able to continue to fly.

Thanks @Proseccoismyfriend. It’s really supportive here. I hope you find the answer for your ds.

Prosecco** if it wasn't something he liked or ate pre ED then I wouldn't make him eat it now.

Mummy I'd want an urgent appointment with the cardiologist tbh, your dd needs the medical tests and I feel like the ED is using her diagnosis as a way to hide what it's doing to her. Given her diagnosis I'd be really worried she's even higher risk of heart failure.

At some point your dd will collapse and the medical interventions will then be more invasive and involve a longer stay in hospital.

Did they advise on FBT Ystd? Did your dd accept that you need to control what she eats 3 meals plus 3 snacks a day?

@Proseccoismyfriend I would agree with girliefriend and take the pressure off the chicken nuggets, but observing closely whether this leads to anything else.

I don't know a lot about Arfid but the texture thing is obviously a big issue for people who have this. If possible I might look to replace the nuggets with something texturally similar to the things he does eat as a possible compromise in case this is more ed driven? And introduce this new thing very slowly with his agreement, and using touch and smell as a first step before very small tastes. I follow a really lovely autistic / adhd guy on instagram who has arfid and he sometimes films himself trying new things. I find his posts quite inspiring because he is able to articulate what's happening as he tries new things etc. His name is Toren.wolf. Maybe your ds might find it interesting to watch how he approaches trying new foods?

@Mummyoflittledragon - sorry things were a bit pointless yesterday. Have you heard of trauma informed practice? Maybe this would help you and your dd work through having to have some physical health assessments. All services including both physical and mental health ones should work in a trauma informed way, but it's variable how many do.

I particularly like how it's laid out in this diagram - the inner petals are the ones you and your healthcare providers can use to support your dd. Have you heard about the concept of 'window of tolerace'? Here's a short video explaining it in the context of trauma and young people. Being trauma informed helps people to have a bigger window of tolerance...

Hope they might help you think about how to move things forward with your dd, it sounds like things are very tricky just now. Apologies if this is stuff you already know!

Thank you, I am inclined to go onto something else and see but worried about relapse and having to reintroduce them if the worst happened. Dh is of the opinion we keep going 'tough love' but I honestly know he's forcing himself and not enjoying it, I want him to have a happy, positive relationship with food again and this doesn't feel the right way. Thanks for the Instagram link I will have a look.

Thanks @Girliefriendlikespuppies

The clinic advised nothing and won’t without diagnosis.

I emailed the cardiologist dd saw asking his advice yesterday straight after the appointment as I was disappointed with the lack of direction from CAHMS. He replied he doesn’t deal with ED scenarios. But that it would challenging to interpret without knowing dd’s electrolyte levels. IE if the QTc were prolonged but the electrolytes abnormal because of lack of oral intake he would want to repeat the ecg once she was nutritionally replete. I’ve paraphrased that slightly… but he’s basically saying both blood tests and ecg are required, which is a no no for dd.

I appreciate dd could go into heart failure easily. I’ve told dd it is now too dangerous for her to go dancing. Today was a good day. Her friends are here and she munched through almost a packet of high calorie Dodoni crisp things and a sour cream and chive dip plus grapes. Altogether about 1250 calories. Yesterday she ate a smaller amount of the dip and dodoni to be able to go in her friend’s hot tub. And I just know as soon as they leave, dd will be back to 400 calories.

@greydoor
Thanks for those resources. The window of tolerance was really interesting. I get it as a concept and understand the principle but seeing it on a screen really helps for me to understand just how much I’m pushing dd.

I hadn’t heard of trauma informed practice. I will talk through this when I next see the woman from CAHMS for a check in in 3 weeks time. I’ve just signed up to an assessment for dd with the therapists suggested by guineapigsrule. They sound very gentle in their approach and the sort of thing dd needs. I also asked them what they thought of hypnotherapy alongside, maybe to help dd with the anxiety around medical settings as well as the eating. They said yes but would need to liaise with any outside person so I’m also looking into this.

Now I just need to not try to push this too far too fast with dd because this is me all over. Throw everything at it, see what sticks. And I need to be slow and steady especially if there is some ND going on with dd.

Where are you @Mummyoflittledragon ? We had 6 sessions of hypnosis for ds, it really calmed him and helped us through the refeeding process

@Proseccoismyfriend that’s good to know. I’ve filled in a contact form with someone local, who has worked with trauma in children. Not listed specifically ED but has a very decent CV.

We are in the Midlands. Sorry don’t want to be more specific as I don’t name change. Where is this hypnotherapist based? If close please send me a PM if you don’t want to state your location.

No completely understand, we are north east but she does work online. In person maybe better. If you can't find someone though I'm happy to recommend her as she worked in trauma with children & anorexia

Ok thanks I’ll bear it in mind. I’m really glad it has helped with your ds. Is there anything the hypnotherapist can do wrt to his struggling with textures?

I have spoken with dd a couple of times today as she has a few friends over. It’s busy. I’m taking the opportunity to get them cheerleading me a bit over her size and because dd speaks more freely with them around.

She’s told me she doesn’t want to put weight on and be fat like she was before... she wasn’t fat. I explained how refeeding works that food goes to fat then muscle so it’s actually regaining muscle.

She told me that she isn’t going to eat like she did yesterday because eating like that lasts a couple of days and it’s disgusting to eat like that every day (around 1250 calories). She said (and none of her friends agreed) that she looks good and will stop before she looks bad. And the thing she has finally said is that she wants to lose more weight. I think from this I can conclude anorexia.

Is it good she’s admitted this or does it make things worse or no difference? Up until a couple of weeks ago, I thought it was ARFID but I’ve been seeing more anorexia signs and I think maybe it has now tipped into anorexia.

DD was so angry today at her hospital appt. Supper(evening snack) is causing so much conflict and distress and she is also pushing back on bedtime. She is only 13 and it’s 11pm by the time I get her in to bed sometimes and she will have an alarm set for 6am even although she doesn’t need to be up until 7am. I’m exhausted as it’s conflict until bed and then I get no downtime on my own at night before the whole merry go round starts again.

Mummy I was told never to comment on how bad/thin my DD looked as apparently this was exactly what she wanted to hear. Their thinking is so disordered.
I think that it is good that she is talking to you and her friends but I think you will all need psycho education to know how to respond when she says she’s fat etc. it took me too long to understand that telling her she was dangerously underweight was exactly what she/ED wanted to hear. As hard as it is, limit comments to how pretty her hair is or her clothes.
She is so lucky to have supportive friends.
if she admits she has a problem then that is good. Took us years and hitting rock bottom to get to that point.

Can’t it is relentless. And because it is a long road to recovery you will need some days/nights off to recharge

@Shanghai101
Oh gosh. Thank you for that information. Dd hasn’t said she’s fat. But yes, I understand what you’re saying. We are seeing the private clinic next week. They expect parents to participate in the programme so we will be getting counselled on how to speak.

As for your comment on dd admitting she has a problem. Do you think what she said to me is admitting she has a problem? I am so new to this I don’t see what she said to lead you to that conclusion iyswim.

I agree she is lucky to have such supportive friends. Idk if I said before, one of her friends, who actually is a bit of an airhead for lots of things gets it the most. Bless her. She has also made the connection that dd thinks she’s defective and won’t date because of her seizure condition and is trying to execute a plan to help change dd’s mindset. Pretty clued up for a just turned 16 yo.

I have just got off the phone from a hypnotherapist, who has told me that if dd does have ARFID and anorexia, that combination is extremely dangerous. I suppose it is and that makes sense. Her friends took her to Bella Italia and made her eat pasta today for the first time in months and she ate most of her meal so another 700 calorie day, which is good going again in comparison to the preceding week. They slept over yesterday and have decided they’re staying over here again tonight.

Mummy I agree with Shanghai** about not discussing what your dd looks like or to have any sort of rational conversation with her about what her body needs. She sounds exactly like my dd was at the beginning of anorexia, it's a waste of energy to expect them to comprehend what they're doing.

Are you doing FBT? Ie preparing the food and giving it to her? Did Camhs give you any guidance on this? You should be making and preparing all her meals and snacks, it sounds like her daily intake is still very low?

The stock phrases to say when giving them food is 'this is exactly what you need' 'trust me' 'this is exactly the right amount' etc.

It really is treading on egg shells with what you should and shouldn't say.
I'm constantly getting it wrong at the moment.
I need to dig out my Eva Musby book, brush up on some stock phrases
@Mummyoflittledragon Seems like your dd thinks she is in control of it. But it very much sounds like the ED is actually in charge.
@Cantfindthewordsddstruggling I wake up every day and say "here we go again". Relentless.

But, there are many success stories, hold on to that everyone

@Girliefriendlikespuppies
You’re right. I know it’s true I can’t have a rational conversation with dd.
We got zero guidance from CAHMS as there was no diagnosis given.

I have tried FBT and bought the Eva Musby book. Dd was sarcastic and taunted all of the stock phrases. Told me how pathetic I am and that she’s not a little child. She refused point blank to engage. The process actually made her worse and increased her stress levels, which made it harder for her to eat.

She will also only eat certain foods. It’s always been the same wrt to food albeit as she got older she began to eat a ever widening variety. There is no point in giving her something she won’t eat.

Dd eats best when with friends. When at home with just the 2 or 3 of us (dh, dd and me) she does not like being watched. I can be in the same room as her or she can be alone. She eats better in front of the tv etc but all of the distraction suggestions don’t work with her.

I agree dd thinks she’s in control @guineapigsrule. This is the story of her life, being in control. She will have to learn strategies to relinquish control. This is the path to recovery.

@Mummyoflittledragon I forget if you said your dd is autistic. She sounds very similar to my dd though. Have you ever looked at PDA? (Pathogical Demand Avoidance) It's like a branch of autism where even the usual autistic methods don't work on them. It's an extreme anxiety based need to be in control.
Might be worth a look. PDA society is a good place to start.

Mummy I agree with you. I don’t think from what you’ve posted that she thinks she has a problem. Hopefully though she will be able to see that it is a problem as her world starts to shrink and then things can start to change. Supportive friends are so important and hopefully will be a motivation for her to engage. As things stand it sounds as though she thinks she is in control. AN teaches them that they can control their bodies but actually they can’t and by the time my DD realised this she couldn’t stop the weight loss even when she started a meal plan. She was genuinely shocked as bloods and ECG were off and everything hurt but the weight loss continued even though she was eating more than she had done in a long time. Lots of people tried to warn her but she only heard what she wanted to hear.

@guineapigsrule Dd doesn’t have a diagnosis of autism. My dh has autistic traits and his father as well. My fil was the one whispered about by a couple of family members when I first got together with dh many years ago because of his ‘peculiarities’ and before the majority of the general public was aware of autism… On this basis and because of some of dd’s behaviours / reactions over the years, I think there is a chance there is some level of neuro diversity. Having spoken to the therapist you recommended, she also thinks this is a possibility but I’m aware dd cannot be diagnosed at this time. If this is the case, she masks incredibly well and nothing has been noted at any of the 3 schools she has attended. I will look into PDA. I’ve heard of it. But don’t know a great deal about it.

@Shanghai101 I do hope she will see. I’ve told her she isn’t going dancing this weekend and she’s fighting it a lot. I asked the woman from CAHMS for advice on dancing. She said dd could go if she ate really well and that should be 2000 calories. I told dd she would need to be eating at least the 1300 calories she ate a couple of days ago to go at all… and that wouldn’t be actually dancing. There is a possibility of just marking the dances, which wouldn’t be dangerous to her health. I need us to talk to the ED specialist first and the appointment is next Thursday.

Thank you both and everyone, who has responded to me and read dd’s story. I am so overwhelmed by the ongoing support I’m finding on these threads.

Morning all, my daughter is feeling sick majority of the time she said it’s not even the food she just feels sick even if she looks at someone it makes her feel sick she can look at an object and she feels sick can anyone shed any light on this for me to help her as we’re on verge of being admitted again. Could it be anxiety??

Hi @Mumofellie I am sorry your dd is at the point of being readmitted. As you’ve seen from the thread I don’t have the level of experience to answer your question. I just wanted to say I hope your dd will feel less nauseous soon. I am wondering if it’s because she’s recently become more resistant to eating so maybe this is a reaction and the ED trying to take back control. From previous comments on the thread, I can see there are points in time when the ED fights back more strongly. I remember one comment from someone, whose dc was approaching being fully nourished and I’m wondering if it can happen when weight hits a certain threshold. I can see your dd is not near that point atm. But maybe she is reaching a threshold for her ED? Idk. I’m hoping someone more knowledgeable will come along and answer your question.