Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

My DD is 15. Yeah she is still at school. I think though a lot of the pressure and reasons she then doesn't eat is because of school/exam pressure! She has always been very slim though so the doctors think her WFH isn't a tire reflection of what she should be. She was always on the 2nd percentile for weight.

@Iknowdino im glad she’s still at school. Are you under the ED team? Did they agree she was ok to not for the weight to height ratio?

Yes she is under the ed team, having weekly or twice weekly appointments at the minute. No one has mentioned not going to school, just giving up her activities. Her bloods are really good and all her health checks have been normal. She has gained some weight over the last few weeks. Mostly doing ok but then has a bad few hours! How is your dd?

My daughter is about 65 percent weight tk height. Not allowed to do anything. She’s always been so thin but the ED team won’t let her do anything. It’s so hard to keep her happy not going to school or to her football etc.

Wow, she sounds great!

I’m new to this thread, and reaching out for any advice. DD 16 has just had her first CAMHS appt she has a BMI of 15 and initial advicr is bed rest. DD is distraught as she has just started college and desperately wants to continue to attend. She loves her studies and has been really trying hard to make friends. I feel at a loss what to do, I do not want her mental health to deteriorate further but also know that the situation is very serious. We are at this point after months of repeated visits to the gp and have only managed to get some action after formally complaining. I am completely at a loss how to support best to support DD.

@MidlifeMary I’m glad you’ve reached out for help. Is she refusing to eat? Have they said how they said how they will support her? I understand why you she would be so sad and why you are unsure what to do. People here are very helpful.

They haven’t mentioned sending her to hospital have they @MidlifeMary?

Hi @MidlifeMary , sorry you’re here but you will find lots of solidarity. We had to struggle for a long time before DD was diagnosed. Have you been given a meal plan? You are supporting your DD by helping her body to recover, keep telling her she can do all those things once her body is healthy, but food is medicine and for now she has to let you take control of that while she recovers.

Hi @MidlifeMary finally getting a diagnosis and medical input can be very disorientating. And I totally understand the desire you feel to keep her at college to maintain her fragile mental state.
But she is very unwell. You have medical advice that says as much.
Your DD is very ill and needs to follow that advice. Which is bed rest and eating (I assume you have a meal plan and they have ruled out a refeeding risk?)
Think of it like this this: if she had cancer and was told to bed rest whilst she fought it, you would absolutely do that. This is no different.
Tbh if she is in the depths of AN, her mental health will already be at rock bottom. Because physically her brain has shrunk and been affected. Her thought patterns are not working properly. She probably has a voice in her head shouting at her constantly telling her not to eat, or that she has to move.

Sometimes as parents we have to hold the tough line: "no college until CAHMS say it is physically safe. And that means eating to this plan"
As a carer of someone with an ED, you will often by the bad guy. Its just how it is.
Your priority is saving her life.

Thank you all for replying. I really appreciate your advice and experience. We have a follow up appointment on Monday - that’s for the physical health clinic and then a Choice assessment on Tuesday at a different location. CAMHS have not mentioned hospital or a formal diagnosis. DD will eat three meals but is very regimented and breakfast and lunch are too small. I have introduced snacks and upped fluids but it is clear I need to be in fully control of all food prep/ meals, not just supper. She is secretive but says she is not making herself sick. It would really help to have a meal plan/ dietitian input, I guess it is early days and thankfully we are being seen quickly now. I am so upset that once we realised and DD accepted that she needed help that the GP did not complete the referral properly meaning CAHMS did not have the information they needed. We do not have a care plan yet, I’m assuming this will be covered next week- let’s hope so anyway.

I need some encouragement. Do you find your children put on weight? Quite quickly? If they are very low weight?

And do you find you cope better with the feeling of doom etc??

@Pearl97 unfortunately most of us are here for the long haul. The only time my daughter put on weight quickly was when she was eating to get out of hospital. She lost it all again and more. Now I hope for slow and steady. This group and possibly carers groups locally offer a lot of support. it’s a long journey for most people so you need to look after yourself.

i still have times of worry but I am trying to celebrate the small wins and not think too far ahead. We’re going out dor her birthday at the weekend when she was in hospital last year. It’s a mark of progress.

i am sorry not to be more encouraging but things get better for most over time. Sending love and good wishes.

Once I got going with feeding dd the weight did go on relatively quickly. Most weeks was between 0.5 and 1kg, it required a lot of work and double cream though!!

Our turning point came with insisting dd was blind weighed, she couldn’t cope with seeing the weight go back on.

The feeling of doom is a tricky one, I’m not sure the anxiety will ever completely go 😕

@Girliefriendlikespuppies that is a great amount. Did your daughter eat the food ok? Bling weighing isn’t a very good idea!

Isn’t a good idea?? For us it was life saving.

I wouldn’t say she ate the food okay, there was a lot of resistance, push back and distress but with time it did get easier. I was gradually able to increase portions and I’m a big advocate of adding calories to foods. Everything had butter and cream added to it (obviously dd had no idea.)

I meant good. Sorry my mind is all over the place xxx

I agree with hiding calories. And also did that. My DD put on about 0.5kg a week sometimes more. Although some weeks despite the same meal plan she would gain nothing. That could be quite disheartening. We also blind weighed.
Olanzpine was also useful for my DD.
We made our own meal plan, using meals and snacks DD had eaten prior to illness. I added milk drinks and snacks in (again things she was used too). 3 meals and snacks a day. She still eats to this pattern today (independently now and whilst at uni abroad!)
The push back was relentless. She could not be trusted at all. She would hide food, exercise in secret, she was out 'walking'and run the whole time, say she had had snack and hadn't. Etc etc
I took over all meal planning, shopping, prep (without her in the room), and serving. And then did everything in my power to get her to eat. Distraction, TV, encouragement, bribery, threats to remove stuff. And I didn't really leave her side for months.
Its vv tough.

@Lottsbiffandsmudge how much weight did your daughter have to put on? How lovely to read she’s healthy and happy now xx

I cant remember the absolutes. But she was around 75% Wfh and we went to 105%

You all gave me some brilliant advice and support a few months ago when I discovered the extent of my DDs ED. We have been under the Maudsley since and she has been great at finally adhering religiously to the meal plan. She has recovered all the weight she lost since February, and they are tentatively talking about ending treatment. They have stopped the Olanzapine (which had really helped but I agree is probably not needed any more) and she has been on Sertraline for 7 weeks now. It’s been really tough but physically she is in a much better place.

However, her mental health is still rock bottom. She hates her therapist at the Maudsley for “making her better” when she doesn’t want to be. She says there is no joy in life and she was much happier when she was restricting. She says the only reason she doesn’t fight the meal plan any more is because I wouldn’t let her. It’s so hard to hear these things, and to see her so low all the time. The physical symptoms are so much better, how do I help her with the mental ones? I feel so sad.

@fridayatlastthis is really really normal. The body catches up way more quickly than the brain does.

Keep feeding her and make sure you’re getting all of the high calorie and high fat foods in, animal fats such as butter, cream etc are really good for brain recovery. The brain is quite a fatty organ which is why it takes such a big hit when they are restricting food.

Id also keep pushing with weight gain, they tend to need to go over where they would normally sit. It does even out again eventually but for recovery I’d push for over 100% wfh.

@fridayatlastwell done for getting your dd so far. I’m sure several people on here have said it can take 1-2 years after weight restoration for the brain to recover (I maybe wrong) but I have noticed this with my child even now we sometimes have moments when the doubts creep back in and decision making is difficult, especially socially if we have plans he’ll panic last minute and want to cancel. New one this week is difficulty talking on the phone so we’re working on that together. Ed’s are so complex and recovery isn’t just weight restoration and food.

Hi all.
My daughter was doing well with eating from mid August until about 2 weeks ago.
But now she is really struggling. She gets really cross again, like the early days: smashing things, hitting and missing meals. And she is so angry with me and my husband. And she is so sad again.
Im worried she is going to stop trying.