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!

lotts, great that DD is growing. DD has not grown in a year (so essentially no growth between 11.5 and 12.5) and she is rather short and very, very upset about it. ED team say time will tell if she grows more but they are hopeful (esp as she has not started periods yet). Gives me a bit of hope when I read these little success stories.

Sorry to read of so many people struggling. It’s heartbreaking.
@NanFlanders your situation sounds so difficult, I really hope your daughters team can make a plan to support and keep her safe moving forwards.
@GrannyRoberts my daughter also has severe OCD and high dose Sertraline or fluoxetine ( in her case worked better) did make a difference to that.
Can she tell you why she doesn’t want to take it? In my experience it’s been really important to get input for both OCD and AN as they seem to feed in to each other and both really need specific expert approach.

I totally understand not being able to recharge. My DD was inpatient for 4 months and I couldn’t switch off at all, I was either working/ travelling to hospital for visits or just feeling so anxious/ guilty for not being with her.

My DD has been home for 4 weeks now and things are very tough. Struggling with every meal & snack, weight is dropping, self harm, OCD ramping up also. Am so worried and exhausted. Feel have barely had a chance to catch up with her older siblings who are home from Uni. It’s all consuming.

This thread is so helpful to know there are people that understand. Sending love to you all.

I'll email the psychiatrist now about Olanzapine. Thanks all. @Lottsbiffandsmudge I also love recovery stories so absolutely don't feel bad about chipping in! Glad your DD is growing!

@Frankie291 that sounds so difficult. The advice to recharge is all very well but the reality is different. I'm sorry it's so tough. I agree with you that the OCD needs to be addressed, I believe that it's the primary driver here. I believe Sertraline is licenced for OCD in children and perhaps that's why they are pushing it. I've asked about Olanzapine too will see what they come back with. I don't know why she won't take it but suspect it's because it doesn't fit one of her "rules'. She's fixated on not eating outwith set times and I think maybe because the meds round is done slightly after breakfast it's maybe that. It's possible she actually doesn't want the worries to go away though.

@Curlyhairedassasin hopefully your DD will catch up, it's good that the team are hopeful. My DD grew last week! Which is great but combined with only a 200g gain did make her WFH drop a bit which was a bit gutting when we're desperately clawing towards 80% where they will start therapy and home passes can be considered. But I guess its a good sign that her body is putting some energy into growth.

@GrannyRoberts did the OCD predate the AN?
OCD is often part of the ED. My DD did have OCD as a child (c 9) which she had a small amount of CBT for and which I learnt how to help her manage with these techniques. It was well managed.
During her AN it came back with avengence. All around eating and exercise.
It's really hard to know what was true OCD and what was the ED.
Her team (rightly as it transpired) focused on the ED over everything else. Self harm, ocd rituals anything that wasn't actually life threatening was not treated whilst she was underweight. Her key worker explained that eating for her was so traumatic that other mechanisms came into play to deal with those feelings. But as those behaviours did not put her under threat of her life they were not the focus. It was hell to live with tho. Food was their only focus. And olanzapine has recognised benefits to many in assisting with food.
As weight went on the other behaviours diminished. It took all of those 2 years to resolve and for 12m of them she was 105%.
At 70s and 80s and often 90s percent nothing in their brains is working properly.
We can only imagine the hell it must be for them. Also she was a child. She hadn't gone through puberty and would not have coped with CBT at that point. I know some on her are using that route with success but for younger sufferers I think carers need total control. Ask any pre pubescent child to be independent and they can struggle. My DD was like a toddler. She didn't want me to be in control but she needed me to be. She now says me taking over saved her.
She no longer has OCD. She is still a perfectionist and is hard on herself but the other extreme behaviours have gone
There was no therapy involved.

@GrannyRoberts we actually had a hard time with DD to agree to meds. She refused in hospital telling is that she knows it is there to help her with her AN and that she doesn't wanna gain weight. She also googled and read that Olanzapine can in high doses cause weight gain. We had the tool of the NG tube threat in hospital so she took it a d after 2 days, noted a change already (and the fear of taking it also went away).

Fluoxetine has taken the edge off dd's anxiety. She's been taking it for around 3 months. Small steps so far and not much improvement around food/body image yet but I hope being able to leave the house and do things with friends gives her a glimpse of what she's missing and help her choose recovery. She's on a low dose so I'm going to request increasing it at her next appointment.

Sending love to everyone x

@Lottsbiffandsmudge the ocd came first, following her being ill with a virus of some sort - started with a focus on health and germs, obsessive hand washing, obsession with illness, avoidance of situations where she may be exposed to germs. Moving on to a brief spell of fixating on use by dates etc. She had some therapy (a mix of CBT based and play therapy) which helped a bit but then the thoughts moved on to healthy eating as a means of supporting her immune system. So cutting out "unhealthy" foods and exercising so that her body was healthy and she wouldn't become ill again. It spiralled from there. Her anxiety is so high now and I can see the skin on her hands is red so I suspect handwashing may be kicking back in. The ward just phoned to say she's taking a long time in the toilet and they suspect she's pacing again. It might be that or a return to her elaborate toileting rituals but either way it's not good.

Oh bless her granny she's so young to be dealing with this 😕 my dd developed ocd once we started FBT, it was definitely a way of her coping and has got better with weight gain.

Would the unit consider giving the meds covertly? I'm not sure if there are liquid alternatives that could be mixed in her food or drink? I suspect not but it might be worth asking. Ultimately it's the equivalent of caring for someone with any brain based disorder (ie dementia, schizophrenia etc) who can't make rational decisions about their care or if they need meds.

My dds height stalled for about two years but she's now over taken me! I think she's still growing at 17.

@Lottsbiffandsmudge yes I agree that’s my experience so far with this. My dds anxiety’s and ocd are all food related. She eats set things all at set times but never had any ocd traits or worry’s before this Ed. I’ve been told they should go once the food side is sorted out. I know this seems pretty petty considering what other posters are dealing with so please don’t take offence. I just wanted to know how people deal with family occasions with the Ed. My husbands parents and family don’t know about the Ed. He doesn’t want them to know and nor does dd. I think we should tell them just so they don’t ask or say the wrong thing but he’s Adament no. This is because he feels his mum is a drama queen and makes everything about her and she would be telling everyone she knows ect. I’ve said we make it clear this is for Facebook and the world but anyway k have to respect their wishes. Just seen her and already asking questions why doesn’t she want to eat out and ow she used to and does she not eat anything! Just because she refused a lolly. his sis said ow she’s so skinny and pinched her skin! My thoughts are if they knew they wouldn’t say things like this and now are prob gossiping about this. How do you deal with family events on weekend we have party in garden will eat before she goes but I don’t want her questioning again why she isn’t eating . I don’t want my child being uncomfortable.

@Girliefriendlikespuppies there are liquid alternatives to the Sertraline certainly and possibly it could be mixed with orange juice which is already on her mealplan but I have no idea whether it would be detectable. I can certainly ask, thank you for the suggestion.

Whippetlovely

We told family and very close friends when dd was diagnosed. It was a relief to get it out as dd had been ill mentally for a while and avoiding family events so it stopped the constant questions.

Personally I think keeping it from people who see dd regularly could be a recipe for disaster as they'll inadvertently say triggering things or ask awkward questions and dd might want to back off from seeing them which will cause even more questioning. It's better to sit with them to explain everything and point them to resources so they can do their own research into how to be supportive to your dd.

Eva Musby has a section on family and friends in her book and I think the Beat website has a section on how to tell people.

Whippet I agree you have to tell close family and friends, I also gave them clear guidance on what they could/could not say for example not to comment on anything dd ate or didn't eat, not to connect on her appearance, not to talk about food or weight loss etc.

Anorexia thrives in secrecy so I think the more open you can be about it the better.

Someone asked about the Barbie movie a while back? Dd went and told me there were a couple of triggering scenes, at one point they talk about cellulite which dd struggled with. Reassuringly for me dd was able to reflect on being triggered and talk to me about it which I appreciated. Overall she said she didn't like the film and thought it was over hyped.

@GrannyRoberts
saw that you said DD started to become ill following a virus.

Have you heard of PANDAS? It is very rare and not well known, even among paeds but I thought I mention it

https://www.webmd.com/children/what-is-pandas-syndrome

Thank you I understand what your are saying but I can’t tell them against husbands wishes. I have explained to him again today that I think they need to be told to stop the triggering comments but he says absolutely no. I’ll just have to feed her before and get on with it for now. Hopefully they will be busy talking to other ppl to notice that she’s not eating there. I think they will be less likely to say anything with hubby around anyway as they’d get a short shrift from him.

@Curlyhairedassasin interesting. One of the ED nurses asked about strep throat. To my knowledge that's not what she had but will give that some more thought certainly.

I had a zoom call with the camhs Psychiatrist alone yesterday because dd refused to join for her meds review. After a long talk he's recommending discharge with six months open to go back anytime without needing referral. That will take her up to 18.

He feels that as she's negative about the clinic and the therapists that there's little point in pushing her to attend just to check physical obs. He's going to contact the gp to take over her meds and write a letter to say I can request physical obs at the gp if I feel dd needs it.

I'm not sure how to feel. I have another phone appointment next week to discuss it again. Gut instinct tells me it's time to leave camhs as we are both revisiting trauma each time we attend. As dd refuses to engage we aren't getting anything out of it other than obs.

My main worry is dd thinking she's better, when she absolutely isn't. Dh suggested just saying nothing to her about discharge. I doubt dd would bring up the subject of appointments anyway as she hates them.

She's not physically ill anymore and she eats - just enough - but she's still struggling mentally. I get where the Psychiatrist is coming from. If she won't engage and accept therapy what more can camhs do?

@BagpussSaggyOldClothCat
You are right to worry about what message discharge will give you DD. Our DD was discharged for non engagement with therapy and she took it to mean that she was fine and I was overreacting and that resulted in a steady decline over a period of months. We fed this back to the unit and they said they are now looking at the messages they are giving young adults I.e telling them they’re not underweight enough for hospitalisation gets misconstrued as there is ‘nothing wrong’ with them. Hopefully, the team will have some advice for you on how best to handle this to ensure your DD maintains.

@BagpussSaggyOldClothCat completely understand where you're coming from with the messaging! They hold onto anything that suggests they are well don't they? My DD took us being sent home from A&E (and in fact all the dismissals we had in the lead up to her emergency admission) as an indication that she was fine and we were overreacting. So frustrating.

To all who gave advice on the Sertraline/Olanzapine issue, we had a chat with the psychiatrist again this morning. Firstly re forcing medications, as she's not detained, they are apparently limited in what they can do, but the nursing staff are chipping away at it. Hopefully they will get there. The reason for Sertraline rather than Olanzapine is apparently because they feel her thoughts and behaviours are largely anxiety driven (which I don't disagree with) and although they do commonly use Olanzapine the view is that this tends to be really effective for "anorectic thoughts" but my DD is coming from an anxiety/OCD place which Sertraline is better for? I don't know, but it sounded convincing to me at the time. I think given they do commonly use Olanzapine on the ward and have judged Sertraline to be a better choice in her case I have to trust that judgement. If only she would take it!

Thanks, yes I agree we have to tread extremely carefully here. It's hard not to feel frustrated with dd for not engaging and accepting help. She's been offered one to one counselling and body image sessions which I'm sure would be beneficial but she just says nothing will work for her so why bother? So frustrating.

Had to pop on to share a little milestone today that only you lot would understand!

So today dd has been completely independent with all her meals and snacks, she made herself breakfast, lunch and dinner 😳 needed prompting to have a snack and drink this evening but otherwise has done really well.

It's taken over three years but really hoping we are finally getting somewhere.

@Girliefriendlikespuppies Yaaaayyyy!!! That is such brilliant news! All the hard work (yours and hers) paying off. Great to hear.

Great news @Girliefriendlikespuppies So pleased for you! X