Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Hello everyone, it’s been a long time since I’ve posted here. Can’t believe you’re on thread 9! Hope you don’t mind me asking some advice from all you lovely people. But I’ll just give you a quick update.

DD is now 17 and about to go in to Year 13. She is happy and healthy and doing well with her Alevels. She will be applying to Cambridge alongside other universities in the coming months. I would say that she hovers around 95% wfh which is what she was before ED and I genuinely feel is her natural weight (she is petite and little). She eats completely freely and I don’t see any evidence of her restricting in any way. I kept up the prompting her to eat snacks morning and afternoon for a long while after we ditched the meal plan and that was the last thing to go. If I’m honest once I relented that final aspect of control I could see that it was keeping both her and me still stuck in that ED mindset and was preventing both of us from truly moving on. Once I wasn’t enforcing the regimented snacks it gave DD the opportunity to naturally snack herself throughout the day which is a far more normal and natural way of eating.

Anyway, on to my question. We were on holiday in Cyprus a few weeks ago and unfortunately both DD and DS were struck ill with diarrhoea. DS was poorly first but got over it in a few days. DD was completely wiped out. Literally everything was going straight through her and there was persistent blood in her stools. After being bed ridden for 3 days with no signs of improvement we made the decision to take her to hospital. They admitted her instantly and she spent 2 days and nights there on an IV drip. Stool sample showed Salmonella poisoning. Blood test showed one of the markers for bowel inflammation where a normal reading should be no higher than 10, DD’s was 130. They pumped her full of antibiotics and electrolytes and she was discharged the morning we were flying home. She has made good recovery since we have been home although unfortunately lost a lot of weight.

But it has got both of us thinking has DD done permanent damage to her digestive system with the Anorexia. Upon speaking to our GP once home he said that they don’t routinely give antibiotics for Salmonella in the UK and wait for it to run its course. But I don’t think DD would have turned the corner without them. How would we go about finding out if there is anything? I seem to remember someone on this thread with a DD who had digestive issues as a result of their ED. Was it @myrtleWilson?

Sorry to dive back in. I hope people are doing as well as can be and still fighting the fight.

Girliefriendlikespuppies

My dd has also snubbed her grandparents, one of which is very ill and not sure how they are still going. Dd knows how ill they are. I realised today that if she refuses to see grandparents this Christmas it will be 3 Christmases since they've seen her. They probably wouldn't even recognise her if they passed her in the street. It's really sad as they had such a close relationship before ED. Most of the time we saw them it was for birthdays, Christmas etc and there was always food so I can only think it's because she associates them with food and its easier to not see them than deal with the food issue. For a long time I tried to get her to see them with no food involved in between meals or just pop by to drop something over and quickly say hi but even that stopped.

It's just another thing that DH and I have to deal with mentally. The Grandparents are really understanding but we feel terrible about how she's treated them.

You're post gives me hope that her affectionate side will return.

@Rollergirl11 sorry to hear your DD was so ill on holiday. The only way to be sure would be to book an appointment with a gastroenterologist. I think your GP would have to make the referral.

Hi roller I remember you from when your dd was unwell, great to hear she's doing so well.

It sounds like she's just been really unlucky with getting salmonella on holiday and if her bowels and digestion aren't usually an issue I wouldn't be too concerned. The weight loss would worry me more tbh and I'd be focusing on her regaining that ASAP.

Thanks @Shanghai101

Hey @Girliefriendlikespuppies good to hear from you and I hope your DD is doing well. She’s generally speaking been okay day to day although I do think she suffers from IBS. I do too so it must run in the family. Yes we are on a mission to get the weight back on. Thankfully DD wants to regain; she says her boobs are noticeably smaller and she wants them back. It’s not just the weight loss itself that is a concern but it triggering the old thought processes and behaviours. ED is always lurking looking for its way back in and it would be so easy for her to attempt not to regain the weight. But she’s in a good place atm and doesn’t want to go back there. Here’s hoping it lasts!

Hi @Rollergirl11 yes, you're right - my DD has suffered ongoing damage to her digestive system (although we seem to be turning a bit of a corner - hurrah!) How can I help?

I'm always coming on with stories of doom, so I thought I'd share this for balance! I'm trying not to get too excited, but I think I've seen a couple of green shoots with my DD over the last few visits. Instead of sitting with her head on her knees and not talking to us, we've enjoyed shooting nets in the secure garden at the Unit, and having a kickabout. She's put together a reasonable, staged plan for discharge - rather than asking for immediate discharge. She still won't take meds, but has agreed to therapy, on the condition (which the team agreed) that info shared (other than immediately safety concerns) will be confidential. The consultant is still pushing for discharge at a very low weight (I think he wants rid, tbh!), but the other professionals at her CPA hearings are all saying 95% - he was saying resumption of menstruation which is normally about 86% for DD. Her meal plan was increased today, as losing weight on the current one (probably because she's doing lots of exercise in her room - which she more or less admitted: she's still very unwell) - she didn't go ballistic, but said she'd expected it. She has had a Mars Bar and was also telling me about the other girls going to Costa and Maccy's on time out - so I think she's psyching herself up to do that. We have a couple of walks in the grounds at the weekend - and first time out since her second absconsion next Wednesday, so fingers crossed.

Oh lovely hopeful green shoots there @NanFlanders - am crossing arms, fingers, legs, toes and eyes for you all!

@NanFlanders that is great news and so hopeful. Keeping everything crossed too

@NanFlanders so lovely to see your newest update

Nan How wonderful your dd is interacting with you again. It must feel so precious. I really hope the therapy helps and that seeing the other girls taking steps towards recovery spurs her on even further ❤️

College returns in just over weeks. Dd seems happy to return but has to repeat the first year which she's OK about. She has no plan for lunch and says I'm trying to ruin it for her if I bring up the topic of lunch. It's 3 days a week most weeks and the odd week will be 4 days. She eats a good breakfast and dinner but what the heck do I do about the 3/4 lunches missed each week? She'll be out the house for 8 hours with no food.
I can feel the anxiety building 😞

@BagpussSaggyOldClothCat Do you know she'll be missing lunches? Is that her previous pattern? Does she have weekly weigh-ins that would pick that up?

I’m feeling the same anxiety about dd going back to school as lunch was the one she stopped eating first. Not being able to know she’s eaten it makes me really worry. She still won’t eat in front people. I don’t think we can expect her to go from this to eating her lunch with friends at school. I’m so worried she will pretend she’s eaten it like before and will be back to square one. I think I’ll get her to sit with the pastoral lady to eat her lunch to start although she doesn’t want to start her new school doing something that marks her out as different. I would love to trust that she’s going to eat it but it’s not worth the risk is it? She’s done well up to now just this week agreed to add the third snack so up to 3 meals and 3 snacks. So we are headed in right direction although her bloods said low creative levels but I think the snack should help with that. I just want her to start school and be happy and not have to worry about bloody food.

That should have read creatine! Not creative 😂

Little moan from my side. We are abroad - visiting family. We arrived yesterday and the moment we arrived, DD announced she doesn't wanna eat. She eats only very little, is crying, screaming, attacking me again. It is just like it was in May before she was admitted to hospital. It was going ok up until that point at home. Anyone had that? Flipping a switch the moment you arrive on holiday? What do I do? Fly back home straight away? I am so upset. I was desperate for a break. At least here I have for once some support with DD1.

@BagpussSaggyOldClothCat

Can you arrange lunch support at college? DD is eating her lunch in the staff room - they have a rota for supervising her.

Poor you. Can you leve her with family to get some headspace?

@Curlyhairedassasin It sounds like your really need a break. Sounds like your DD1 probably needs the holiday too. Do you have a partner? Could they take DD home to carry on FBT with her there, if she is struggling on holiday?

@NanFlanders I do have a DH he is away dealing with a family situation elsewhere (elderly parent abroad). Nothing that can be avoided.

DD1 needs a break - I have been more or less alone with the DDs since the beginning of the school hols and DD1 is really stressed by her sister.

@Curlyhairedassasin You poor thing. It's so unfortunate that this awful disease seems to take hold at a time in life where parents need help. Could you call DD's ED team for advice?

Hi, I’ve been lingering around the topic and hoping to learn from more seasoned parents. DD 11 was underweight in national screening at the end of primary. BMI 13, 0.4th centile wfh 79%. We’ve been trying to swim up current over the last few weeks to find out if this can be healthy and just small stature or if there’s something we need to work on. I don’t want to go into too much detail with her in case I make mountains out of molehills as there’s some emotional concerns too but upshot is she’s being referred to ED service for assessment while we wait for some counselling.

Has anyone been in this position where it’s not clear cut? If anyone has any advice on how I should handle it or how I should speak to her about her assessment/what to expect I’d be very grateful!

@Glitterfarti

79%wfh is very low. We had to stop school when DD's dropped under 85%wfh.

Is DDs eating in any way restricted? I guess you can be at such a low WFH without having an ED but I guess then I would expect other medical issues being at play. I couldn't imagine 79%wfh can be 'normal'. But that's my take on it - but I am just a mum, not an expert.

@Glitterfarti Where has she been weight-wise historically? Do you have her red baby book? That might give you some idea what her natural weight line is. And has she lost weight? I was told that kids shouldn't ever be losing weight - even if they are underweight, it should just be that their weight gain slows.