DD13 eating <400kcals/ day

[mumoflittlemice]

Apologies for long post - trying not to drip feed although there’s bound to be things I’ve missed:
Our lovely ASD/ADHD DD13 who has had struggles with food for many years in ways that I (probably wrongly) wouldn’t have characterised as ED, now suddenly seems to be in the absolute grip of it. She has been eating a very regimented diet for some months of scrambled eggs (1-1.5 eggs) for breakfast, a tiny Greek style salad packed lunch for school, a mini cheese portion as a snack, fried egg and avocado bagel after school and then she would mostly eat whatever the rest of the family were having for dinner later in the evening. Then she stopped having dinner with the rest of us saying she was full from her bagel at 4pm. I could understand this and didn’t want to be pushy, reasoning to myself that overall her diet had a good balance of protein, veg, carbs etc and she was still enjoying treats here and there seemingly quite normally - an ice cream in the evening if we had some in, a brownie / cookie at cafe if we were out and about etc. I had noticed her being slightly more vigilant about food in general and she had lost some weight but looked and seemed healthy and energy generally ok etc…

Over the past two weeks she has drastically reduced her intake of food/ calories and is consuming barely 300-400 kcal per day, struggling when she eats anything - openly saying she does not want to eat - and we seem to be fully in a crisis. Her DSis16 nearly 17, DH and I are all desperately trying to support her and I am floundering, we all are. DD13 has lost about 3kg in the two weeks I would say. The only positive at this moment is it is all out in the open and she is talking to all of us (not loads or all the time and sometimes reluctantly) about this. I got in touch with her former therapist who was seeing her during eating difficulties and episodes of SH and she advised GP route first this time as she is actively losing weight. We have the GP booked for Tuesday.

I am really looking for advice on first steps here from parents who have walked this path. I am trying to educate myself on ED / AN etc. DD13 has also admitted recently that she previously had ‘around 3 weeks’ of making herself sick and says that she stopped that. She also says that she has a voice in her head that tells her not to eat etc. she believes she is fat even though rationally she knows she is not. She has become obsessed with coming with me on every dog walk (they are longish ones, about 3 miles twice a day) and I feel foolish for not putting all of these pieces together more quickly and realising how much difficulty our beloved DD is actually in.

She is 5’6” and says she is 58.8 kg. She was over 61kg about 3 weeks ago which I only know because we have to send her observations off when we want a repeat prescription of her ADHD meds. She weighs herself in private though so as much as I want to trust her, I can’t be sure she is telling me the real amount. Her appearance is very slim but not painfully thin, but she’s certainly heading in that direction if she loses more weight which of course she will unless she starts eating more. She seems absolutely trapped and I am desperate to help her. What is the seriousness of her situation right now (it seems very serious to me)? What first steps do we need to ensure we take immediately? What are the pitfalls to avoid and essentials? ED parents of teens who have been there, please can you advise us?

@Mummyoflittledragon os correct, the lack of eating etc is enough for them to help you.

They told us an ED clinic before any other interaction is absolute last resort. I do know though that you must be feeling so helpless, so any help offered is appreciated at the moment.

How is your daughter after the appointment?
I hope you love your new house. I know it’s been so much for you to handle, but in time you will be able to enjoy the house as you’ve planned. Hold on to those thoughts xx

Fingers crossed that she is accepted soon. I honestly can't see any reason why she shouldn't be, no matter what her weight, her intake is too restricted. It's very reassuring that her obs were ok in A&E.

Hospital with a meal plan sounds scary but it isn't as bad as being at home and you being responsible for it all. A lot of the time it's a bit of a restart, to refeed the brain and hopefully get them thinking a bit more clearly. They can also give various vitamins/electrolytes so it's safe to refeed. Although it's purely medical and doesn't deal with the mental health side, it does take the pressure off the parent(s) slightly in this first stage. As many books and online stuff we can read, we aren't trained medical professionals and even if somehow we were when it's your own child it's so so hard.

ADHD meds do often suppress appetite. You might need to notify her consultant as well as GP.

Sorry you are going through this, OP. BEAT have sent out a survey for ND people/parents/carers of ND people to everyone signed up to their mailing list today, so they recognise that ND people have particular barriers to support because not all ED professionals necessarily have a good knowledge of ND and vice versa.

NICE guidelines won’t allow prescribing of ADHD medication under a certain BMI. The prescribing consultant should be part of the MDT and review the medication, even if the medication is now issued by the GP. There is a known correlation between ND and ED, and a high chance that ND is playing a part in the ED.

Thank you all for your generous support and words of advice from a place of having been there (still there?) yourselves.

Yes @Vichy111 this is what I was at pains to point out yesterday; that two things can be true at the same time. I explained that yes, DD always had a 'list' if you will, of foods she would and absolutely would not eat, based on taste, texture, likes/ dislikes etc. The difference is that she was restricted on what she would eat regarding specific things, but not on quantity and crucially she did not hold the belief that she was fat (when she objectively is not). DD was the 'chocoholic' in our family and would demolish an ice cream sundae with pure concentration! Every meal had to have mayonnaise available to go with it and she would use a ton - to the point where we did spend a fair period of time encouraging her to maybe ease up a bit on the old mayo! How I long for mayo madness now... Saying all of this, DD was never a glutton by any standards, she just enjoyed her food as long as it was within the list of things that she would actually eat, then she would eat freely, not overly much, until satisfied and then she would stop. All fine. Yes, she had difficulties over many years with chewing and swallowing some foods and that was a long and difficult phase, but there was no issue like this deliberate self restriction of food to reduce weight. Getting the EDS to understand these nuances feels like something that should not be hard, you would think it was their expertise (!) but as has been said here by pp, it is all about resources and if they can palm her off to CAHMS etc then all the better for their funds. Awful.

Got to dash and dog walk, but I shall be back and appreciate the support and solidarity and just not feeling so alone with this, so much 🙏

I do find the ED team have a dead behind the eyes look. It always made me feel uneasy like I was mad!!! They do often understand they just let you talk, it does get easier once you’re accepted and you get to know them!

Hope you enjoyed the dog walk, it’s so much better now it’s cooler and we’re not out at silly o clock! Xx

My dd is the same re food textures / flavours etc and has always been so. It’s not uncommon. The team we worked with failed to diagnose dd as they couldn’t make up their mind if it was ARFID, anorexia or something else. They gave no reassurance and dd signed herself off at 16, by which time we had someone involved privately. So keep on pushing.

Shattered but wanted to quickly update that DD has been accepted by the EDS and diagnosed with AN. Feeling relieved and also still very much processing this development. They called last thing so that we wouldn’t have to wait another night to hear the outcome which they had reached, which was thoughtful. Her nurse is going to call again tomorrow with more information about next steps. Just wanted to let you know all know.

@Pearl97our new house is right on the edge of a lovely big park by the beach; our pups are in heaven!

That's good news, I hope the eds team can offer you plenty of support. The quick phone call seems like a promising sign for sure!

That’s really good news. I hope you can find a way forward with your dd now that you will be supported.

Your new home sounds lovely. I hope it is a bright beginning for you all.

How are you doing @mumoflittlemice? I hope you’re feeling supported xx

I don’t know if anyone will still look at this, but I thought I would just give a little update. DD is on Day 4 of a 6 day refeeding meal plan, where you move on to the next day once you have completed the current one. She started the meal plan in late July and around 5 weeks on has got to Day 4 which is lasting the longest so far. All of this being said, if you would have told me 2 months ago that DD would manage to eat what she is eating every day now, I would have wept with relief. Eating wise the progress has been very good, mentally she is finding it much harder. Even so, we are incredibly proud of her. I just worry about her really reaching ‘proper’ recovery. You kindly asked if I felt supported and the answer is yes and no. There is a lot of ‘trust the process’ and that is hard to do. There's been no therapy as such as we have to complete the refeeding first and there are some stumbling blocks that I fear we will never overcome, such as on Day 5 you have to add toast to the breakfast for example and I can’t see that happening (DD has never enjoyed it), but we might be able to add a substitute so I can’t write it off. I think we are at a bit of a plateau currently and I need to stay patient and keep the faith. She is having breakfast, am snack, lunch, pm snack and dinner (eve snack hasn’t stuck so far at all), which is quite incredible and I need to keep remembering how far she has come and believe that she can and will keep making progress 🙏 .

I truly hope everyone is ok, MOLM x

Hi, so glad to hear an update.
Progress is frustratingly slow isn't it.
When we had to add toast we agreed on a larger portion of cereal instead which my daughter eventually agreed on! There is absolutely no way on earth she would have that toast!
I do remember a time where I could only dream of her having anything at all for breakfast though!
Well done on sticking to it and staying sane.

That’s excellent news. Well done for getting your dd onto plan. It is so very hard.

This is all excellent information for you OP. You should try to stop her going on these long dog walks with you and exercising much in general until she takes on board more calories. This is really serious. It sounds like your DD has anorexia and body dysmorphia. She needs urgent medical attention. If she continues to with old calories below 800 per day she'll probably end up in a unit where they monitor her every meal and move.

Well done @mumoflittlemice You have come very far, and with the added complication of your DD being being neuro diverse too. Is she restoring weight yet?

My DD eats a similar amount to yours, we've never managed full meal plan since we started in march. She is also not really on board with recovery. She has managed to restore about 3kg of weight though and we see glimmers of hope.

Our service did start offering us therapy earlier than they normally would due to DD being a bit stuck and not recovering as quickly as they'd like. Could you push for that for your DD if she'd engage? Ours wouldn't unfortunately.

Keep on keeping on, we're all in your corner!

So pleased to hear the progress your DD has made @mumoflittlemice. It's such a slog, so you should be proud of your perseverance, and hers
We've plateaud a few times and been amazed each time we've found a way to nudge forward, you will find the strength, and an alternative your DD will accept
Hoping they offer therapy soon, that has made a big difference here
Sending support x

I’m glad she is making some progress. What are your plans now school starts back? Is she well enough to go to school?