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!

@GrannyRoberts I am so relieved for you. Hope the early referral means a swift turnaround. Sending hugs.

@NanFlanders thank you so much. It means a lot to know that there are people I don't even know out there rooting for us. I have no idea what to expect from this in-patient admission. Its a specialist unit for under 12's and they only have 6 beds. It's a big relief as we can't manage this at home, but it's very scary too.

Hi all, could do with some advice.

Had an adults meeting with the ED family therapist and DD14s private therapist as she's thoroughly stuck and we need a way forward.

There was a lot discussed, but one thing that has been raised again is the possibility of ASD. DD's (also AN) cousin has recently been diagnosed after years of FBT failing. It's not conclusive as I can't honestly think of any signs before she became unwell, and she has formed close friendships and has generally been ok in social situations.

But some of her behaviour is not typical for NT AN so they want to keep it in mind (the next step seems to be RO DBT if anyone has any experiences?)

I just wanted to hear experiences on those of you with DDs also AND. How much have you had to alter the approach? DD is incredibly controlling at the moment, SH and complete food refusal seem to be tools to stop us making any changes or progress. It can't continue but I'm so confused over how I should be approaching this

@GrannyRoberts My DD is in an adolescent unit, but my friend's daughter, aged 11, went to an under-13s Unit (not sure where you are, but we are in Liverpool) and I understand the care was very good. (You can look up CQC report for Units on the web) Friend's daughter started secondary school from the Unit. She is now home - and much improved - but still has lots of support from services. I'm sure you'll miss her, but I know you know it's in her best interests. You might be able to get an orientation visit while you are waiting for a space so your DD knows what to expect.

@GrannyRoberts
So glad someone listened. My DD (12) spend 3 weeks as inpatient in hospital in May/June (general paeds ward for re-feeding). We needed to hit rock bottom but for us it was instrumental in turning things around. Hopefully you get the help you need now. Great to hear you even got a place in a specialist unit!

@NanFlanders so parents don't stay on these units? Even when they are so young? Gosh I had assumed parents stayed too. Wow that's something I'll have to digest.

@Curlyhairedassasin rock bottom is where we are now. I'm so glad it helped you in turning things around, I really am. It gives me a ray of hope. I hope your DD is doing better now.

@LittlePickleHead My DD had been referred to the ASD pathway, after she wrote me quite a compelling essay about why she thought she was autistic - I had never really suspected it either as she seemed to have a nice friendship group and was involved in lots of activities before she got sick. FBT never really worked for her and we tried it for 15 months - she preferred to go to the hospital and have an NG feed. (I think it has worked for others with autism though, like @Girliefriendlikespuppies daughter). I have heard good things about RO DBT - though mine won't engage with it. We've just been approached for an adults meeting by the therapist at DD's Unit to see if together we can come up with some ways forward Will DM you if anything useful comes of it!

Thanks so much @NanFlanders - there does sound like similarities. DD would happily drink fortisip for the rest of her life and avoid food - she's also mentioned before she want to be tube fed.

What were the reasons your DD thought she was autistic?

I just feel so stuck - she's so inflexible and every day removing food she 'no longer likes'. I'm getting the calories in but struggling to get her to make any changes without food refusal (4hours sat at the table on Monday night before she eventually had fortisip).

@GrannyRoberts Sorry if I've given you something else to worry about! I don't think so, but perhaps check with the Unit. Parents were very involved though - as they are at my DD's unit - with lots of visits encouraged and home leave asap, as well as parents being trained to supervise meals.

@GrannyRoberts

Much better. From May, DD stepped up her food restrictions, ate vary little, didn't even drink. She lost 1kg per week over 3-4 weeks and then got unwell was was taken to hospital via ambulance. Now she is home, after online schooling for a while, she started school part time again. It's far from ok and hospital was rough esp the beginning. I really thought I am losing my mind. as it was a paeds wards, I had to be there all day to provide meal support. But she is eating much better, restoring weight. We are on various meds too (Olanzapine which I think helped us to turn things round and setraline). And we are having a very long road ahead but I see the light. Much love to you. You are probably at the lowest point but hopefully it will get better from here.

@ LittlePicklehead - feeling like everyone else has a 'rulebook' that she didn't understand (she laughed at jokes with everyone else but didn't know why they were laughing), struggling with imaginative play when younger - would rehearse what had happened in the day, but couldn't invent things, special interests (Hamilton, guinea pigs, gym equipment), discomfort with eye contact, offending people, but not knowing why, sensory issues - would ask for things like a fluffy blanket for Christmas. Nothing drastic, but it did make sense. There's a really good video here about autism in girls which was her down to a T:

Granny I'm glad they recognised how unwell your dd is, I'm surprised they didn't arrange admission to a peads ward today tbh, did they check her obs? 76% wfh is so low bless her, don't hesitate to call 999 if she deteriorates.

Little I suspected autism with my dd pre ED, she had significant sensory processing difficulties from a young age, she had friends but always on her terms, had frequent melt downs, very young for her age etc.

Frustratingly she was assessed around the same time she developed the ED by deaf Camhs (she had hearing loss when she was younger) and they decided all her issues were due to the hearing issues.

It's difficult if they have only developed traits when they are in the grips of the ED as anorexia can present very similarly (obsessive, rituals, black and white thinking etc) I'd be reluctant to accept a diagnosis until they're at least weight restored and eating okay.

I'm not sure it changes the treatment much anyway, I think you can tweak certain things so there's a sense they have more choice (they can pick between two snacks of equal calories for example) and there might be some allowances for sensory issues with food/textures etc.

I played to the autisms strengths of dd needing routine and predictability, she loves a routine and rule so I used that when implementing FBT.

@Curlyhairedassasin I.mentiomed Olanzapine to the psychiatric today after you'd said how it helped your DD but she said my DD's BP is too low to introduce any medication in a home setting although they might do it in hospital.

Interesting the chat about ASD. I have long suspected that my DD is autistic and she has been assessed in the past with an inconclusive diagnosis..I known CAMHS are bearing this in mind too. It would certainly fit with the extreme inflexibility and rigid eating and exercising we're seeing now. DD said to me this evening that she thinks she is autistic, which is the first time she's ever mentioned anything like that. She says she doesn't care either way but she thinks it makes sense in terms of the way she sees the world.

Thanks for all the chat. The ED team are baring it in mind, the the RO DBT plan is going ahead regardless.

I am not sure though, I've seen zero signs of any autistic traits prior to ED - she ticks all the boxes now but perhaps this will resolve when she recovers?

The ED therapist seems reassured that she's still having periods and doesn't seem convinced on the overshooting on weight theory - she seems to think we need to concentrate on behaviour now. It's all very confusing

Granny** those behaviours are classic anorexic behaviours, unless you had strong suspicions a few years ago it may just be anorexia controlling her and not autism.

That said Autism and EDs are closely linked as autism provides the perfect mind set for an ED to flourish. Feeling different, feeling judged, being desperate to fit in, believing thoughts to be true, believing unkind comments to be true, believing healthy eating bullshit to be true, all or nothing and black and white thinking all create a perfect storm.

Hope everyone's weekends have started well. We had cahms intervention team out yesterday following the appointment the day before. DD wouldn't even let them in her room. They spent a long time with DH and I and agreed to come back today dressed in uniform under the guise of taking BP, HR etc. Which actually does need to be done. The CAMHS psychiatrist phoned yesterday with blood results, her kidney and liver markers are abnormal, consistent with the body being in starvation mode she said. She told me to be observant and have a low threshold for calling 999!
DD has not finished her evening meal two nights running. She's so distressed running backwards and forwards all day like a caged animal.
I spent last night listening to her breathe.

Trying to hold it together and keep things "normal" for her little brother too. @Curlyhairedassasin what symptoms in your DD made you call that ambulance? So terrified I'm going to miss something.

Granny if she's not eating enough, exercising a lot and already a very low WFH then I think she really needs to go to hospital or 999 if she's refusing to go. As others have said they can deteriorate quickly. Is the threat of going to hospital enough to get her to stop moving and eat?

@GrannyRoberts

We called 111 who send the ambulance out. I wanted to give DD a good night kiss and she felt stone cold. Took temp. Sublingual was 34 Celsius and armpit 35 celcius (should be over 36). and heart rate was under 40. We have a blood pressure monitor which I tried but her BP was so low it didn't register a reading.

Ambulance crew came and had a portable ECG which was very abnormal, they checked her BP which was dangerously low and her BP was whilst doing the ECG around 35-38.

DD was screaming and stomping around that evening (when I suggested going to a&s). she did not appear unwell at all. My DH thought there is not much wrong with her needing urgent care.

In summary, I would look out for: low puls (low 40s or below and I would go to a&s) and keep an eye on the body temp which is easily done at home too. DD was in a&e 2 days before the ambulance admission and all was deemed 'normal'. it is scary how quickly things can go down. If in doubt, take her to the nearest a&e for ECG/bloods/BP etc.

Hope Monday arrives soon! Thinking of you.

also, if she doesn't eat or drink at least a minimum amount, I would take her in too today or tomorrow. Her body has nothing left to give so I wouldn't wait until admission on Monday.

Honestly granny I'm staggered they've not arranged admission to hospital, there is no way you can know if her vital organs are shutting down unless she collapses and it could be too late at that point.

Plus she will be high risk of refeeding syndrome so trying to turn this around safely at home is impossible.

I'd ring 999 and insist she's admitted.

@GrannyRoberts I'd err on the side of caution. My DD refused all food for 5 days and wouldn't go to A&E. I kept calling CAMHS emergency line about whether I should call an ambulance and they seemed to be dissuading me - emphasized that there was a lot of demand (strikes), I'd be waiting a long time and "You know best, mum". I kept taking her heart rate which was normal, so I worried I'd be putting stress on the ambulance service when other people really needed it. She refused to go to an emergency appointment for obs, but said she'd go to her normal appointment the next day, which she did. At which point all hell broke loose - apparently her heart was working extra hard because her body was under extreme stress and she was fed under restraint as 'a life-saving measure'. The psychologist kept saying, "You could have called an ambulance.".

If she'll go to A&E, I'd take her now. If not, I echo previous posters about calling an ambulance.

@GrannyRoberts
just saw you said DD dropped from 84% to 76%. That is shocking. DD was 86%ish and dropped to 84% in a couple of weeks and that was enough to trigger admission as her body couldn't cope. Actually shocked they leave her at home with that numbers.

Hi @GrannyRoberts please take her to hospital. Seriously I cannot understand why they have left you at home. She should have been admitted to a general peads ward whilst waiting for the unit bed. So she can be properly monitored. She is too far gone for home....