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

D1 she was blind weighed while we were under Camhs (which always stressed both of us massively) but once she got close to 100% wfh we stopped weight checks and then she was discharged. I haven't got any scales in the house, I keep an eye on how much dd eats and if her clothes are fitting okay etc.

The last weight she was told was 2.5 years ago and it was such a disaster (she'd gained a kg) that it caused a massive deterioration in how much she would eat and all the ED ramped up. In hindsight I wish she'd never been told any of her weights.

Dd wasn't blind weighed at CAMHS with agreement as we knew she'd make up the numbers in her head anyway (for context she was 17 at this point). Weigh ins were the most stressful moment of all our week - I've shared before the weird moment where I both wanted a gain and worried about a gain...

However, a clusterfuck from the NHS meant that Dd, at her first Adults appt (delayed by about 8 months) resulted her being told her weight in the first 5 mins of the appt - absolutely no health or therapeutic reason for this to be disclosed. Dd was distraught and spiralled - we were nuclear levels of annoyance.

18 months on, Dd is 20 and is still in recovery - I think she'll be in recovery for a very long time. We don't have the plunges into massive restriction etc but it is still harbouring not far under the surface

Myrtle that's terrible, I have asked for the fact dd needs to be blind weighed to be added to her medical notes. Dd actually agrees with this and at a recent medical appointment said 'you can only weigh me as long as I don't know the numbers' which I was really proud of her for saying.

Especially given the initial backlash I had when I threw the scales out and told dd she was going to be blind weighed.

I've just seen 'Please dont weigh me' printables on Etsy for £3.

Camhs know dd must be blind weighed and her weight not referred to at all but I'm going to print these for gp, hospital etc.

DD is blind weighed at CAMHS (she asked for that right from the beginning) and we don’t have scales at home any more.

But she says she can always tell the results by the subsequent conversations and tone the ED nurse takes in the rest of the appointment…which I suppose is true but we can’t really get away from that as it is key to next steps etc.

DD’s CAMH nurse blind weighed - then went on a course and said the new thinking is to open weigh. We declined the offer - it made me feel like they are constantly experimenting with their approach to this dreadful illness.

Surely treatment plans should be individualised D1? I think unless the sufferer is onboard with knowing they have to gain weight (which let's face it is unlikely) then no good comes of them being told their weight.

Bluedeer that is really annoying, have you told the nurse that your dd is picking up on her attitude?

@BlueDeer same here. They know if they've lost as the meal plan then gets increased = freak out. And if the meal plan stays the same, they know they're probably gaining = freak out. There is no winning 😞

Frustrating, whilest waiting 6 months for actual treatment from camhs DC lost 6 kg.

@Girliefriendlikespuppies we were part way through the treatment when the nurse suggested this, not in front of DD though. I was already losing confidence in CAMH at that stage and tbh received more help and support from this group.

This group has been a lifeline for me. Camhs appointments are traumatic and we only stick with them for obs.

This illness is completely bonkers and even 18 months in it still brings new issues almost daily and this is the first place I turn to for help.

Today dd is insisting I buy a prepared bag of lettuce instead of eating the actual whole lettuce we already have because it doesn't state the cals on the packet.

She's saying she won't eat dinner at all without the lettuce bag, which brings on huge anxiety for me (and she knows it) but I know she will eat after giving me hell for hours, because we've been here many times. Without the voices of you all in my head telling me to stand strong I would cave in and go to the shop.

Nailed it…that’s exactly what happens ☹️.

@BagpussSaggyOldClothCat the ED trying to push you around is so hard. At the beginning DH was driving around for certain types of bread, we argued as he wanted DD to eat whilst I knew we had to stand up to the voice and to have any bread. We got there by standing up to the voice and it backed down, and as time passed the ED forgot this demand.

I think this is where you need to control the meal plan not them, Camhs gave us a meal plan and dd laughed and said not a chance in hell.

I went with what I knew she'd eat and added calories where I could. There was no increasing or staying the same as I was already pushing the max in that I could.

I aimed for 3000 cals a day and that was about enough for 0.5kg gain a week.

Feeling crap tonight. Dd caused hell because the plumber came to service the boiler and it took longer than I thought. She bombarded me with messages complaining about him being here ordering me to tell him to go. He was downstairs and she was upstairs so no where near her! The poor guy was so nice and chatty and I must have come across as really rude because I was so stressed.

This is not how I saw my life turning out at all. It's no life. Why are my friends dc doing their DOE and planning uni open days while mine is like this 😞

@BagpussSaggyOldClothCat sorry to hear of your heightened stress levels, living on high alert is exhausting - I hope you got an OK nights sleep.

I had to stop comparing my DD’s life to that of her peers, remembering that she is ill and the hope that we get through this - but it’s hard. She can come back to education / training later and some of my friends DD’s have done exactly that, starting Uni at 23 years old with life experience under their belt has benefitted them.

Hope you have a better day today.

Thanks D1ANA22

I hold onto the hope that my dd will get well and things won't always be like this. I miss her so much. She used to be so loving, confident and funny. Dh misses her too. We try not to talk too much about how much we miss her. It hurts too much.

Today has been better. Dh and I have loads of lovely food and enjoyed the coronation. Dd won't join us at all but we're used to that now and just get on with things on our own.

@BagpussSaggyOldClothCat coronation lunch, sounds like quality time with your DH. When we have a decent evening I savour it and remember this when things aren’t as good, and I remember it doesn’t rain forever.

Dd told me last night she doesn't have an ED anymore, I told her she was quite correct, she doesn't have an ED - the ED has dd!!

She didn't know how to respond to that.

It had been a particularly rubbish day with her not eating enough, my mum made a coronation quiche and mentioned it was made with cheese so dd suddenly hates quiche 🙄 we went into town and there were loads of lovely food stalls, dd wouldn't even look at them.

Bumped into an old friend and her teen dds who were getting excited about buying some delicious doughnuts and I felt really sad for dd.

EDs cast a long shadow and even though dd is so much better than she was she is still not free.

Girliefriendlikespuppies

I can relate to all that. We're past the dark days of complete food refusal thank god, but dd eats only just enough and only her safe foods, plus whatever I manage to add. There's zero spontaneity in her life when it comes to food.

It is really sad. So much of the great parts of life revolve around eating food. From bitter experience I know that days out and holidays can mean she'll eat barely anything so we don't attempt them anymore.

Surely they must get bored of restricting at some point and want a more exciting life for themselves.

It really is so upsetting isn't it, that the parts of life that would have usually caused so much excitement (holidays, Christmas, birthdays) are now overshadowed by food and rigidity and the element of spontaneity is gone.

We're going on our half term holiday at the advice of the ED therapist. DD (14) does genuinely seem excited so I'm going to load our cases up with fortisip and some safe snacks and hope for the best. We're self catered so even if she just had pasta for the whole week so be it.

But one of the rituals of holiday that we all love is the getting dressed up and going for dinner. DD is still talking about this but I know if we attempt it the occasion will be fraught with anxiety. Plus I don't want her to be too active given the weight she's just lost. Not sure how to balance her having fun with keeping her safe. But I do have hopes this holiday will be positive as her and her DB (10) do get on really well and genuinely have so much fun when we're away.

Yes, I have also found myself jealous of others. "My DD was also into sports, movies, going out for meals with friends, DofE."
Now we just sit inside watch TV, or read, or dd dd lays down as she is always so tired
In the Easter holidays we went on holidays DC did enjoy it, but all the walking did result in further weight loss. Difficult to balance it all

DD won’t sit with us, at all. Sits in the back of the car even when passenger seat is free, stays in her room all the time except to eat, crosses the street to avoid DH. I guess the ED is punishing us for challenging it - tbh I don’t ever see our relationship returning. They didn’t put this in any of the parenting books I bought when she was born!

D1ANA22

Your dd sounds very like mine. She sits in the back of the car with headphones on and pretty much ignores us.

LittlePickleHead

I do hope your holiday gives your dd some motivation - if she wants to join in with activities she'll have to eat. Hopefully you'll manage some nice meals out while you're there even if you & dh take turns taking your ds. It's sad to split the family but you deserve to grab some normality wherever you can. You can use this group to vent to if you need to, but I hope you'll be too busy enjoying yourself.

I hope that this isn't insensitive but I just wanted to come on and thank @Lottsbiffandsmudge @BagpussSaggyOldClothCat @Havehope21 and a couple of others who, a few months ago, when I suddenly got really worried about DD, gave some really useful, sound advice. Importantly, you listened and took my worries seriously when everyone I spoke to in real life (including DH) brushed it aside.
Three or so months on and I think it was orthorexia rather than anything more sinister. DD started eating more (in every sense - calories, range of food) quite quickly but I still felt there she was monitoring her intake and eating what she perceived to be healthy options. This weekend, that seems to have been abandoned with her choosing food because she liked it.
I feel very fortunate to not only have her back but not to have had to witness her descend into the frightening place that so many of you are living with.