Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Cantfindthewordsddstruggling

Antidepressants can help. Not sure if you're the right age for HRT but it helps me a lot. It's very cruel of mother nature that we often have teens & menopause at the same time.

Other than medication I find taking time out for myself and switching off from ED really helps. I swear by a daily walk and I often visit a little coffee shop in a local garden centre alone with my book. Gardening also helps - I grew a million tomatoes last summer. Or I watch a movie or TV show that makes me happy while I knit.

summertimesadness24

Sorry the nurse in A&E didn't understand. ED is barely covered in training so unless staff have personal experience of it I'm afraid you will come across that kind of attitude 😔

You're right to keep dd at home as a day at school uses a lot of energy. When my dd was off school she would have to stay in bed and be treated like an invalid until she ate. The more meals and snacks that she had the more privileges she would have back, such as being allowed out of bed to watch TV. The sheer boredom of not being allowed phone etc can work magic but you have to be strong and show her you mean it which is very hard when you're feeling worn down with it all.

Oh yes! I'm struggling, started counselling, got anti depressants, about to start taking them. I've been trying to find things that are self care, things that make me happy. Exercise is the best thing but I hurt my foot last year so it's mostly yoga, tai chi, walks. I love gardening but I've lost the joy in it. Hopefully as Spring comes it'll return. I'm trying to read books rather than scroll on SM. I do like doing things with DD, watching TV series, jigsaws. It's nice to spend time with her not worrying about calories. Sometimes I just need to curl up under a blanket and do nothing.

I would really like to be off work but I've no sick days left. Thinking about how much SSP is and if I can change jobs. I know someone who gave up their well paid job and got a job gardening and she loves it so much. I just don't think it's a great time for me to start something new.

Anyway I hear you! I hope you find a bit of your mo-jo soon. What do you love doing?

Yes, me, it's relentless. DD was in hospital for 4 months and we pushed through both still working full time, visiting every day and trying to take care and keep things normal for DS (9). Just before DD was discharged I started to have panic attacks, palpitations, flashbacks to how awful things had been before she was admitted. I had 6 weeks off work at that point, went back in December. I feel like a husk of my former self, I have no reserves left. I can't face doing anything beyond what we need to do to get through each day. It's not a life really, for any of us. I'm sure I'm perimenopausal too which is in no way helping. I'm just so on edge the whole time and i don't know what to do to make it better.

Above in response to @Cantfindthewordsddstruggling

Summer is there another a&e locally? I have a feeling someone else on this thread had to find another a&e to get the help they needed. I'm sorry that nurse was so useless.

@GrannyRoberts that sounds grim, are you on hrt? I started it years ago and it helped me so much. Admittedly I wasn't dealing with the hell of an ED but worth considering?

@Eyelashesoffire I'm not on HRT, I am sure I would benefit from it though. I'm a bit scared to ask the GP about it, I think because I don't really have anything specific to go to them with, just feel generally rubbish, but can't really pinpoint symptoms as such! And don't want to be sent packing as a time waster! Same with counselling/therapy/anti depressants, I feel weird about asking for help. Stupid I know!

I was going to ask the same

GrannyRoberts

I would definitely make a GP appointment to discuss peri menopause. I don't have the classic symptoms like hot flushes or mood swings (yet!) but I get awful anxiety and recurring wee infections so that was enough to warrant HRT which has helped massively. There are so many symptoms that us women often just out down to ageing and we don't want to make a 'fuss' but it's important to get any help you can, particularly as you have a poorly dd to care for which is also putting a strain on your mental health. I wish I'd got HRT earlier as looking back I realised I had uncomfotable symptoms for at least two years.

So what I thought was going to be a better day after refusing breakfast
She has now refused dinner

Sat down at 515 said ideally she has until 6pm but we've extended it til now when I've just sent her for a shower as she hasn't touched it

I know I have to be consistent and coz the clinic said limit to 45mins when we did she just waited for 45mins but then we changed to no time limit and she saT there for 4 hours so no matter what method if she she refuses that's it

She's done
NO breakfast
Eat Half snack 1
EatLunch (Macdonalds pls don't judge ! Just more likely to it but that's even an effort )
Eat afternoon snack
Refused dinner

So that's what we are averaging on

So if we went to a&e they wouldn't admit her - no other a&e local

So our next clinic appointment is Thursday

So
When she comes down from shower I'm going to give her her last snack of the day as otherwise she or the ED will think she's won

I've watched the videos and reassure and encouraged but she is staring through me

I feel like I've lost my daughter

Not sure if I need a handhold or a slap round the face and a stiff drink. Just been to GP, she’s 82%wfh, no other obs done. He thinks it’s depression/anxiety and she should go back to school full time to make her less isolated. No other support, counselling has finished and all the scores are unchanged. No other recommendation, just pipe down and go away.

I'm beyond sad today and even lost my temper a few times as baby was on one and throwing tantrums and DD moping around all day and just staring into space

She constantly yawns when I talk to her and rolls her eyes
I know it's the ED but it's sooooohard

I'm not having any down time as now I feel I can'tet her on her iPad or chat to her friends like she used to

Hello it’s been awhile. Lots of ups and downs, been a bit downhill since Xmas she was throwing snack away at school. But now is having it. Then leaving bits of her food each meal then to the point of trying to leave half a plate! Lost weight but we ensure she eats every bit now and has stayed the same so no weight gain but no loss. Told she needs to have two packs of crisps not one which sent her into a meltdown , took her three hours to eat two crisp first time. We think it will be better to leave as one pack of crisp and increase calories on one of her other snacks to make up for it. Fed up with the tears and arguments about food. Exhausted. Anyway sorry a bit of a muddle but I want to ask we have a trip to legoland planned for sons birthday. What about dinner she only eats meals I’ve made? I could bring it with me but where do I heat it up? Will we be allowed to ask restaurant to heat it up and then take it back to room as she will not eat in a restaurant even her own food. I wonder what others do? Otherwise we won’t be able to stay over but my son is really looking forward to it.

Aw this is terrible that is very low weight. Why is the gp so nonchalant? Can they refer to chams Ed? They will then asses to see if she needs help. Either way that is low so surely they can’t just not be bothered about it that seems so negligent in my opinion. Xx hugs

@summertimesadness24 hello sorry not read all your posts but I can see your having a hard time. While we were waiting appointment we gave her two huels (protein drinks) a day lunch and breakfast. I know it’s not food but it’s calories and vitamins it may be worth a try. My dd found it easier to have that than eat and that added up if made half with milk to 1000 calories. At the end of the day you need to do what you can to get calories into her whilst waiting so for us it worked to keep her safe until we got the help and advise we needed. Worth a try.X

@Glitterfarti I'm really sorry to hear that. Am I remembering right that your DD was discharged from the ED service a while back? Can you be re-referred or can you get in touch directly? As you know, 82% is pretty low, DD was still in a wheelchair in hospital at that weight and certainly wouldn't have been allowed to go to school.

Hi, new here.
My DD14 has suspected AN.
She has an urgent referral to the CAMHS TEDS clinic and first appointment on Thursday.
She is of very slight build & underweight anyway which would be ok if she was eating properly but she has been hiding this for a while, cutting out lunches & snacks & excessively exercising to loose what she puts in.
She is currently 5ft 5 and 40kg.
My DH & I are Devastated & trying to come to terms with it & all the while she doesn't seem to think it's a problem.
This week we have been given an eating plan & she has been following it (plenty of tears) we have also suspended all exercise although she is still going to school who are watching her eat there.
Next week (half term) we are due to go on holiday for a week. I don't think for 1 minute that she will be allowed to go & we will have to decide whether to cancel or for my DH & I to go & She remains at home with grandma who she adores and doesn't rebel against.

Whilst we love and support her, My thoughts around going away are that if we allow her to dictate what we do does this give her ultimate control?
Also it has been a tough year before this she suffered terribly with migraine which we have just got under control with medication & we have had family passed away etc and we really need a break to be able to manage this properly or we too will break.
Any thoughts would be much appreciated and what you think the outcomes of her assessment may be?
Thank you.

Welcome and so sorry you find yourself here DTD123
I assume it's dd's assessment on Thursday? They will ask you and dd a lot of questions and they'll do her physical observations and come up with a plan for you. Generally that consists of regular appointments to check her physically and family based treatment that you do at home. The aim is to take total control of 3 meals and 3 snacks daily. Taking control of a child with ED is really hard. There are lots of resources online. Most of us here use Eva Musby's resources such as her book and you tube videos.

Regarding your holiday - if your dd isn't going to eat enough then being away from home will be really stressful. Using going on holiday as a bribe to eat might work but there's the risk it could backfire. If going abroad you'll need to add her illness to your insurance.

People in this group are all at different stages and have a wealth of experience and advice to offer so hopefully we can be of help.

This Early on in her illness if she has anorexia she will need loads of support I wouldn’t feel comfortable in leaving her and you would you enjoy your holiday as you will be worrying about what she is eating / doing / feeling. I would postpone it but everyone is different so no judgement as long as her nan is able to ensure three meals and snacks to be honest it will be a lot to ask of a grandparent to cope with the stress of it. Sorry that you find yourself here I’ve found chams Ed very good and helpful thus far.

@bagpussaggyoldclothcat thank you for the reply, yes it's her first assessment on Thursday. I know this is just the start of a long journey and it'll be tough especially with a Teen who thinks she knows best all the time!
If they give medical advice that she can't travel then we couldn't go as she wouldn't be covered by insurance and I'm guessing they can do that at this appointment?
She really wants to come with us as we've been planning it for a long time but it will be a busy week, active holiday not a sun bed holiday and my fear is if they've advised against any exercise then she can't do it.
I don't want to be a bad parent if we still went though but we've had 14 years of challenging behaviour and a lot to deal with lately, I just think we need a break but don't want to do further damage by going.

Hi @DTD123 we did go on holiday last year a month post diagnosis and can tell you categorically all of us experienced PTSD. I never wanted to go on holiday again Ever. And I was pretty sure it would never be possible Ever again. 8 months on we had a very different holiday though DD is still in recovery rather than restored. My own personal experiences obviously tint my perspective but I would postpone if possible. Life gets very small for a bit with a child with an ED and yielding to that weirdly made it easier for me to cope

@GrannyRoberts I'm sure that my symptoms of menopause were heightened by the killer stress of the ED. I wanted to just 'push through' but my sudden horrifying anxiety has disappeared with the HRT

@summertimesadness24 @baggy speaks the truth...our most successful treatment incentive was for DD to get away from the boredom of when we clamped down on Everything till she regained some weight. Very stressful for us too but teenagers do not relish being stuck with their parents day and night (I was sleeping on her floor to stop night exercising)

Doesn't sound stupid at all, I have felt the same. My lovely friends told me I needed to take time off work, I wouldn't have done it without them. I did self refer to IAPT and wasn't expecting much, maybe a short course of counselling but they've referred me on to a counsellor who can offer quite a long course.

I'd just book an appointment with the GP and see what they say. I was very pleasantly surprised how nice my GP was. You spend all your time helping your DD, it's reasonable to need a bit of help for yourself too.