Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

I hope it's okay for me to join. I have a friend with ED so always looking for ways that I can support x

Lottsbiffandsmudge

Wonderful 👏
I hope your has an amazing time.

HI treespouse

I'm so sorry to hear your DSD is struggling with food and anxiety.

It sounds like she's had a lot to cope with. The psychologist sounds like they don't have good experience with Eating Disorders as the advice is very much against letting them get on with it. The treatment is to take control using FBT - Family Based Therapy where the carer/s takes control of all meals and drinks.

Once a sufferer begins to lose a lot of weight their brain becomes affected as basically tells them not to eat. It's a dangerous situation and needs control taken ASAP. It is difficult for you and her dad as she's not with you all the time but if you and her mum can get on the same page about how to help her and be consistent it will be in her best interests.

There are some good resources on the Beat website and if you look up Eva Musby there are some excellent videos on you tube that explain anorexia in a clear way. It's a good place to start. Hopefully between you all you can start to turn it around for your DSD before she becomes too poorly.

Little you are completely right about recovery not being linear but each set back is shorter because you know so much more about what needs to happen. I think you've handled it really well.

Nan that definitely sounds like progress, I hope you're managing to recharge a bit as well.

Lots amazing update, well done your dd. I personally would be cautious about too much nutritional type stuff as well but it is hard/impossible to protect them from it forever.

Bagpuss interesting re the vitamins, dd now takes a chewy multivitamin that also has evening primrose oil in it and I've noticed a massive difference in her mood especially around her period. At one point she was suicidal in the week before her period and that seems <touch wood> to have gone now.

Treespouse welcome to the thread. The advice from the French dr is the complete opposite of what is advised in the U.K. Have a read up on FBT and the maudsley approach to treating EDs. Your dsd sounds very unwell, has she seen a uk Dr? She will need bloods and an ecg doing as a priority. As a family you have to take full control of all her meals and snacks, she needs to have 3 meals and 3 snacks a day - all need to be high calorie and high fat. Your dsd should not be allowed in the kitchen or anywhere near the food preparation, all food related decisions are made by her parents.

It's great if she likes milkshakes, you can add double cream to these to get a really decent calorie hit.

Do you know how much weight she has lost? The idea is to get weight restoration as quickly as possible to give the brain the best chance at recovery.

Thank you bagpuss what you say absolutely makes sense and it's definitely the more intuitive way of dealing with it. I wonder if because her care is based in France they have a different approach/are even behind the Uk and others on how to deal with it?

I will look up those you mentioned and have a good chat with DH tonight about it.
I know I'm only stepmum but the difference in her physically since the last time we saw her is so stark it really concerns me. suggesting we go against the medical advice she is receiving in France will be difficult so I want to be armed to the teeth with back up and research.

We are actually at an event today that includes a sit down five course meal which we haven't had to navigate yet. She's quite open and admitting to vomiting after eating before but she promises now she doesn't do that but I do keep a close eye. It's such a minefield isn't it

@treespouse I'm sorry your DSD is going through this, you've had some great advice already. Sharing care between two countries sounds challenging, particularly as it's likely there will be major pushback once you take control of food and the ED pushes back. It's vital you and her mum are aligned.

I had a q for you all in the wake of DDs relapse.

She's being compliant at the moment and I'm using mostly behavioural incentives (eg limited phone time only increased after meals, babysitting only being allowed once her intake is back up - she's very money/shopping motivated and is now broke!)

We had (with hindsight far too optimistically) booked to go abroad (about 3 hour flight) for May half term. She was doing so well and it seemed a motivator as it's somewhere she's really wanted to go. Given the relapse I think it's very unwise for us to go and we can cancel accommodation/move flights. We have specialist insurance but I don't think they would cover an emergency related to AN.

However DD is still talking about the holiday and keeps mentioning what she'll do when we're there. It still seems to be a motivator. I haven't yet told the kids we're postponing as was waiting for things to settle down a bit.

It's madness to consider going, right?

Have you got other children? If it was me I'd still go. The change of scene will be good for you all and especially if you've got other children, it's giving them a chance to do what they want. If you take this motivation away from her, what will she do?

Lotts I feel like I've read a message about your dd but can't see it now? Was she playing in some final? If so then good luck and well done to her.

I'm just so worried about a medical emergency whilst we're so far away. But we do have a 10yo DS who is also looking forward to it.

That's a difficult one LittlePickleHead as she's so looking forward to it. We've cancelled 2 holidays abroad due to dd's illness. I was relieved both times to be honest - my dd needs familiarity and routine or she doesn't eat and it was really stressful trying to work out how we would manage.

Have you let the insurance company know about her most recent relapse?

No I haven't, so I guess I should. It will be an active holiday (water parks etc) so my head is saying it's a bad idea and I think I will also feel relief if we make the final decision not to go.

We will do something instead, maybe a uk lodge holiday. So not as hot/exciting but still activities for DS and a change of scene

I'm just holding off saying anything at the moment to not derail...

@LittlePickleHead would you be far from a hospital if needed?

Yes it looks like it's quite a distance to a major hospital, there are small emergency rooms but I doubt they would be equipped or understand ED

It's porec in Croatia if anyone has any experience!

Little how long are you going for? There's two schools of thoughts on trips abroad. One is it's a definite no no as it's too risky and the second is it's a great motivator and the change of scene will be good for them.

I was only brave enough to take dd abroad last year and it was okay, I think dd did lose a bit of weight and the buffet style breakfasts and dinners at the hotel were challenging. We did a few U.K trips and tbh they were easier to navigate (but not as nice as being abroad!)

We're going for a week. It's self catering but obviously with flying were limited what we can take, and I can't 100% guarantee we'll have food that feels safe to dd.

Without the relapse I felt ok enough we could make a plan and manage, now the thought of food strike so far from home and not speaking the language fills me with terror

@LittlePickleHead I would go with your gut instinct, which to me seems like you are very wary of going so maybe you don’t want to put yourself and DD in that position.

With the illness my DD’s anxiety is spiked and she has developed a fear of flying which can happen anyway in adolescence as they become more aware of their mortality - that may not affect your DD but to make you aware of our experience.

LittlePickleHead

If you do go on the holiday, do you think the threat of getting on a plane back home if she starts restricting, would be enough to keep your dd eating well?

It's a difficult situation and I agree you do have to listen to your gut instinct. You know your dd best.

As carers we do have to put ourselves first sometimes even if it means disappointing others. Our own mental health matters too. We have to be careful not to put ourselves in a situation where we are taking on a lot of stress just to keep everyone happy.

summer vacations has been raised in our family. DD 16 says she does not want to go with us - also she has a fear of flying. She will be 12 months weight restored in July and is eating all foods OK, she eats to a ‘schedule’ but it is OK.

I don’t want our younger children to miss out on a trip abroad and I am considering taking a fortnight and leaving DD at home with her grandparents - they are in their mid seventies and I would ask that they sleep at our house as DD has all her things here.

I would stick the house with food and prescribe what DD has for lunches and dinners (she makes her own breakfast). Has anyone attempted this - is this realistic? The alternative is the younger siblings go away with one parent - they want to go away with both of us though.

Nomore that sounds fine to me if the grandparents are happy with the plan. If it's just the fear of flying stopping her I'd encourage her to go anyway. I have a fear of flying and like any fear the more you avoid it the worse it gets.

Hi Nomoreplease23

A trustworthy 16 year old should be able to choose whether to go on a holiday or not, so in that respect it's a fairly normal family situation for them to stay home with grandparents or whoever keeping a close eye.

Obviously with ED lurking there are other factors to consider, but it sounds like your dd is doing really well and you have got a good plan. Could you try a weekend or a few days not too far from home at first just to test the water and make sure everything runs smoothly? It'll give you peace of mind that she will be ok for the longer trip.

@Girliefriendlikespuppies she refused at the gate in the airport last holiday - I do think though that she might fly id she was with a friend, that’s a possibility and the exposure that I know she needs.

@BagpussSaggyOldClothCat the few days break I hadn’t thought of - see if grandparents and DD can cope OK at home, we’ll try that.

Funny you say about flying. Is it another common ED/anxiety thing to get new phobias? Dd refuses to go in lifts since she got ill but was previously absolutely fine and has been in lifts many times, even the one to the top of Rockefeller.

We don't have any holidays planned but I do worry that might be another issue if we do fly anywhere so it's not just the eating issues that put me off booking anything. How to get bags around in the airport without using the lift etc and what if she refuses to get on the plane, which is a big possibility if someone looks at her funny etc (in her head).

As @Girliefriendlikespuppies said need to expose DD - she hasn’t enjoyed flying for a few years now - but her ED has amplified this to a refusal to fly. She wanted to go on a school trip abroad this year, we worried even if she got there would she be worried about the flight home and refuse, leaving her stuck in another country.

@BagpussSaggyOldClothCat We have the same worry about a family holiday, and don’t want her worrying all holiday whilst she is there.On balance it may be better not to take her abroad.

Has anyone here used a day treatment programme? They have this service at the Maudsley and I'm wondering if it's the next step