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!

@Havehope21 and@Girliefriendlikespuppies many thanks for this!

@NanFlanders I can't imagine what you all must be going through, it would be terrifying enough without worrying about the cliff drop in support at 18, adding that to everything you have to navigate seems so ludicrously unfair

@NanFlanders I think you need to give them a try to get her stable before being referred to adult services.
DD turned 18 and was kept on by CEDS for a few months as she was almost fully recovered but the basically said themselves that to go to adult support meant starting at the bottom of the waiting list again

@NanFlanders
I would really consider meds. I am absolutely convinced that it was the Olanzapine which helped DD initially to enable her to eat. DD is still on them and wouldn't function without them, I am sure.

I cannot imagine how difficult and worrying things must be for you. How can they even consider discharging her? What do they think will happen? Who is going to keep her save? Are there no adult units which would fit her profile?

@NanFlanders I know what you mean about giving meds against her will, but as I said to my DD, a diabetic child doesn't want an injection every day, but has to have it to save their life. Someone going through chemo wouldn't choose it, particularly a child who wasn't able to understand, but it would have to be done. Try and think about it that way and it might help?

@NanFlanders gosh, I really feel for you, such a difficult position to be in. But as others have said, she deserves every chance at recovery and it sounds like this may be the only way. Xx

How old is she bluedeer? It's crazy they haven't tried olanzipine on your dd when it's known to work so well for anorexic teens managing irrational thoughts. My dd believed avoided toothpaste at one point for fear of ingesting calories, it's absolute madness but you're caring for someone whose brain has literally shrunk so they can't think rationally.

Nan I agree with the others, you haven't got any choice, they need to throw everything at her now before she turns 18.

@SwattyPie I love that analogy.

She’s 15, was 14 when this all started. She’s had a weekly CAMHS apt for over 10 months and since June we’ve been asking every week about meds. Going to send an email to the team tonight saying she really does need something.

Thanks all - as usual some really helpful and reassuring comments: I've used a number of them in our written response to the multi-agency meeting.

Hope the meeting goes well nan.

To the pp who asked about binging once in recovery, I asked about it on here for dd. She got to the point where I wondered if I needed to talk to her about actually not eating all the carbs that I'd been desperate for her to eat for the previous two years. She had a huge belly just like Tabitha farrar talks about. But a year on, her shape is much better and her eating is much more normal. There will always be foods that she won't eat - not the fear foods from the height of the ED but the foods she was made to eat during recovery. I think she associates those with being ill. But she happily eats things like cheese which was an absolute no go two years ago

@myrtleWilson I just need to come and say thank you for the pointers to navigate DDs SH. We have been using your bean bag suggestion and then last night we were about to go for a it never happens night out as a family to the cinema and she spiraled after her dinner just as we were due to leave.I put ice into her hands (much to her confusion) but managed to get her from inconsolable loud wailing/meltdown to able to go to the cinema. I know the same things wont help every single time but i have been struggling in my tiredness and fog to think of creative ways to distract . I can't believe we had a reasonable family night out. Huge achievement for us

Hi everyone, Nan I hope the meeting is productive and handled well - you must be exhausted by it all. Would it be worth a chat with Orri - am thinking in terms of mapping out possible options for when she turns 18 so you're not facing a cliff edge? They may well have experience if supporting people for whom T4 isn't working?

@ReineDeSaba am glad you found it helpful and fab news on a family night out!!. You may want to get your Dd to draft up a "keep me safe" checklist (or ask your team to do it with her) That way it puts Dd in charge of the process. It went like this for us

1 how I'm feeling at Green/Amber/Red
2 what I'll do to keep myself sage at Green/Amber/Red
3 what I need others to do to keep me safe at Green/Amber/Red

Part of the plan is recognising how she SH's and how she/you can spot the signs that suggest she's moving from green to amber.

With our Dd, there were certain 'tells' she would for example start fiddling with her collarbone - we knew this was a sign of heightened anxiety so could intervene at green.

Dd would scratch and bang her head on walls so our green/amber interventions were planned around her hands (bean bag, ice cubes, fidget spinner etc) and keeping her away from walls - so she asked in her plan for us to try to get her seated on the floor) this was in addition to usual grounding techniques (say 5 things you can see that re blue, 4 that are red/name one thing you can hear right now/one thing you can smell etc)

As we knew hands/anxiety went together we'd also try to do pre and post meal distraction that included keeping her hands and brain focused - so we'd play bananagram and she and I learnt how to do macrame...

honestly the keep me safe plan was so helpful - didn't work every time - sometimes we still rang crisis line but it meant we had a guide rather than panicking...

@myrtleWilson I will definitely sit down and map this out w DD. Her SH involves cutting so we had a good few weeks where i was shadowing her...including shower/toilet sleeping on her floor as she could not be left alone. I threw away my tweezers because they turned up in her room as I thought she was using them as a 'weapon' and endured a couple of weeks of horrible chin hairs! V recently she is able to articulate the desire to hurt herself so she is getting slightly more privacy (obviously when she is not spiraling and all sharps are locked/ hidden) so this traffic light system would be well worth trying while trying to offer more independence again.We are bananagrammas too!

@myrtleWilson Thanks. You are actually the second person I've spoken to who has mentioned Orri. I've just looked them up. Do you know if they take NHS patients? We don't have private health insurance and all our savings are gone now.

Hi all,
DD restricted her diet from May and then 4 weeks ago refused to eat. She has MH issues, self harms suffers with depression. She Has a therapist for weekly sessions.
Mid July her weight dropped v low so we went to a&e where ekg and blood tests said all was good 😳 they implied she's eating in secret. she was 15 yrs old at 40kg 162 cm/s. Anyway this "non eating" continued until last Monday 7 august. When she finally reached bottom and asked me to help bath her. She was so fragile. Something changed in her mind and she started to eat. In 1 week she has gained 4kilos. She is now constantly eating.
We went to gp and had blood tests last Fri which showed low potassium so we have tablets.
I'm looking for advice on refeeding & how to stabilise.
This swing from starvation to constant eating is worrying.

simsam not sure what the best advice is but 4kg in this short time is a lot and after such a long time of not eating, sounds very dangerous. Have you heard of the re-feeding syndrome? When DD was re-feeding this was done as an inpatient as she needed daily bloods, and all other obs several times a day. I do not think doing this at home unsupervised is advisable. a one off blood test at the GP is not enough but not sure what the best way forward is? GPs usually don't know enough about it. Are you under an eating disorder clinic whom you could contact urgently? My main concern would the 'refeeding syndrome'...

Agree with @Curlyhairedassasin. If she’s been restricting then you need expert advice to refeed safely and bloods need to be monitored

Thanks. I went again to gp who has taken bloods yesterday and will call me today. Seems that her blood work is looking ok - phosphate was a little low so we were given tablets which she's taking.
EKG and blood pressure were both good.
No we're not under a special clinic - her ED happened very quickly. Seems her ED is a Symptom from her other MH difficulties rather than a cause if that makes any sense.
I need to find advice on getting her back to a regular eating pattern. Gp was no help with this.

Thanks for this info @NCTDN

@SimSam hopefully, her eating will normalise soon. But, in the meantime, if you are worried you should take her to a&e. They will do bloods and get the results back while you wait. They’ll also do all the other obs. Good luck

@SimSam please push if you feel there is an ED. My DD was initially under referral for SH to CAHMS emotional but it took a year for it to be picked up because of the huge waiting lists. Unfortunately it was becoming quite clear by then that she had subsequently developed issues around her body and had restricted eating but the therapist focused on the SH and didn't think the eating was an issue. Thank goodness DDs GP was incredible...she kept pushing and endured v rude letters from CAHMs insisting she did not need to be moved to ED. DD was extremely poorly by the time she got moved to EDs. I'm terrified about what could have happened...she was losing weight so fast. Having an external person giving her the plan gives it more clout (I had been trying to start it w her before her referral but she needed an outside authority...she still thought the whole thing was a conspiracy theory...her brain was so starved...she's still very unwell but she's here!) Please don't be fobbed off if you do believe there to be an ED present.

I had my call with the camhs Psychiatrist yesterday and Dd is being discharged. I had a cry but really I just feel relieved. Appointments have caused so much stress for us both. I'm confident I have the skills plus the support here to go it alone now. We arent at the end of this battle but dd is a good weight, looks well and she eats fairly well although still rigid with choices. She's still suffering with dysmorphia and social anxiety and is fairly uncommunicative with us but all I can do is keep offering to get therapy and wait for her to be ready to accept it. The meds are having some positive effects as she wants to decorate her room and has been buying new clothes and sorted out her wardrobe - things that would have been impossible a few months ago.

Onwards and upwards I hope. 🤞

Does anyone if the fb group EDSUK is still going? Just looked for it and couldn't find it.

One of dds friends has just been diagnosed with anorexia and it looks like she's really unwell 😢 need to talk to dd about it later which I'm dreading.

@BagpussSaggyOldClothCat I'm not surprised you shed a tear. What a milestone. Sounds like you are offering everything you can for your DD for when she feels ready to revisit stuff

Hi @Girliefriendlikespuppies . EDSUK is still going, but is now hidden from searches, unless you are a member. If you have a FB account, send me a link, then I can friend you and invite you to the group (bit convoluted I know!)