Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Stilllivinginazoo I hope the meeting goes well. Your DD sounds poorly

Early days with the Rispiridone. DD1 has come through saying that she doesn't want to eat this early, etc., but I'm hoping it's just tiredness.

@Stilllivinginazoo hope it all goes well today for you. She does sound unwell.
@lougle hope your DD eats. That colour thing sounds really interesting does it have a name so I can google it?
Renewed assault this am. Ate but wouldn’t get ready for school. Her head is still beating her up about not ‘doing enough’ yesterday.
Another break down into hysteria. DH tried but lost patience. In the end I just said it is a set back and those are to be expected. That life is uncertain and scary.
She is convinced that she will now ‘lose all her fitness’... so I just validated her fear and worry, explained that all the evidence of the last months was that she would not lose fitness, that her dad and me are trying to make her healthy and stronger which has worked so far.
I also said that yest session is out of our control and hers. That it can’t be changed or compensated for (which is what the ED wants- to add another session in to ‘make up for it’) and that to be able to do the club things next week (which might not be perfect either) she needed to move forwards.
Then she got up, packed her bag, did her teeth and has gone to school! I wasn’t sure she would.
So although I am exhausted and have a banging headache for the third day running I feel I have had a minor win.
She is still withdrawn and surly and she will no doubt kick off against games later but I need to be strong.
Whether the home cooked brownie will make it in at break is another issue....so far she has eaten them but her head will be telling her she doesn’t deserve it...

hes-extraordinary.com/the-zones-of-regulation

This outlines the concept. They've added 'blue' for sad.

Meet done.my heart is broken
She barely spoke,cried throughout and refuse answer,curling up in a ball,regarding questions about body image
That has got to be the most painful thing I've ever seen

Hoping physical round is less harrowing for her

Oh, stillliving, my heart goes out to you both. At least the team must have been able to see how ill your dd is - I really hope they come up with some quick and urgent help for you.

Dd has weigh-in later, I'm really hoping for something better than maintain, maintain, maintain, lose - which has been the last month's pattern. She actually left school early yesterday as it was Games and she felt too tired - unheard of for her, perhaps she is finally over the compulsive exercising. (Or she's unwell.)

@Stilllivinginazoo

@Stilllivinginazoo so sorry to hear that it was so tough. At least the professionals have seen her in a bad way...
Thanks @Lougle I will have a look at that.
Good luck at weigh in @AnaCanDoOne

Really sorry to hear that @Stilllivinginazoo, sounds unbelievably tough.

How are your DDs doing socially? Ours is struggling. Tbh she's always struggled, she's one of those children who doesn't fit in easily with other children and I've always felt she'll be happier as an adult (she has a brilliant sense of humour but it's quite sophisticated). She's had two close friends from y7, which is a miracle, but they're expanding the friendship group and she feels marginalised and an interloper. I think lockdown has made lots of children feel insecure, I think they all feel that everyone else has maintained closeness throughout and it's only them that feels like they need to readjust.

Plus she's probably thinking about food a lot of the time which won't help her feel at ease. Not helped by the fact that nobody knows about her ED - there's even an informal whatsapp group for girls who have mental health issues but she does't see that as something relevant to her.

' I think lockdown has made lots of children feel insecure, I think they all feel that everyone else has maintained closeness throughout and it's only them that feels like they need to readjust.'

Exactly this for my dd too, Valley. Lockdown also made her feel that she has v little in common with most of her friendship group, as without the usual 'who said what to whom' school chatter, they didn't have much to talk about.

She starts 6th form in Sept and is hoping this will expand her social pool.

Complete waste of time.from what I understand as her weight currently ok,and physical exam ok they said she needs go back to school,eat 8x a day(small amounts) to ease dizzy spells and reduce IBS/bloating,read a recommended book and she will magically sleep at night and do more intentional stuff(drawing etc) to boost mood
I can get her to eat 3x a day,8times is a f*ING joke
I give up

@Stilllivinginazoo

Complete waste of time.from what I understand as her weight currently ok,and physical exam ok they said she needs go back to school,eat 8x a day(small amounts) to ease dizzy spells and reduce IBS/bloating,read a recommended book and she will magically sleep at night and do more intentional stuff(drawing etc) to boost mood I can get her to eat 3x a day,8times is a f*ING joke I give up

I'm sorry it wasn't helpful. So hard when you reach out for help and get knocked back.

*can't get her to eat 3x a day
Lougle I just don't know what else to do

At present she's not moving except to go in for 2lessons a day.a return to full school with no eating until evening,p.e and dance will be back on at school etc...it's not going to magically suddenly change anything/be ok

Have you joined EDS-UK on Facebook? Ultimately she has to eat. That sounds simple and it's the most complicated thing in reality, but that's the truth. 'Food is medicine'. There are lots of people on EDS UK who have been through this and have tips.

Oh god @Stilllivinginazoo that doesnt sound helpful at all. I have to say that the ED team here whilst not the worst hasn't really added a great deal. We have had to do most of it ourselves altho we did get meds which are helping. I second the edsuk fb page so helpful.
I do not think she should be at school of she wont eat or drink until she gets home.i cannot believe the prof still think well the weights ok so we dont need to do anything. It's all about their state of mind not weight. I really feel for you.

Stillliving that is shit, did your dd have bloods done? I wonder if that showed anything? My dd had them done and no one ever contacted me to say they were amiss however down the line I found out her iron levels were very low as well as her vitamin D. I agree with lots and lougle that even with ED services being involved they don't do very much 😕 all the hard work comes from us parents.

Maybe with Easter coming up you could focus on getting into 3 meals and 3 snacks a day routine? Give your dd for warning it's going to happen and use every leverage available to get her eating?

Valley my dd has always struggled socially however I would say it peaked in years 7-8 at school. Thankfully she seems to have a group of friends now who seem nice and accept her 'quirks' 😉

Lougle how's it going with the respiridone? Was there not a temptation to keep her on the olanzipine a bit longer as she was gaining weight so well on it?! I know it knocked her out though.

Lots your poor dd, she sounds so anxious 😟 do you think something like mindfulness or a guided meditation might help her? Just something to help relax her, my dd sometimes will let me give her a foot massage and it seems to chill her out a bit.

I've had a busy day at work and dd was keen to 'help' with dinner so I let her make omelettes under supervision, she did okay although had a wobble over how much butter to use (nowhere near enough!!) Anyone got any ideas roughly how many calories a 3 eggs omelette with grated cheese is likely to be? It was also obviously a lot less cheese than I'd of used 😕

I made up calories with pudding as gave her a massive helping of rice pudding with added double cream which going by the packet would be 500 calories ish.

I heard the song So Strong by Labi Siffre come on the radio in the car earlier and I started thinking about all us mums staying strong for our daughters and I burst into tears 😭

@Girliefriendlikespuppies a 3 egg omelette would be around 215 cals for the eggs. Then cheese 60 (15g)-100 (30g) cals. So around 300 calories. Great pudding top up!

Re. Respiridone she still seems as hungry, but less sedated. The Psychiatrist phoned today and suggested that she has the evening dose before dinner, as dinner is not as easy as the rest of the day. I've said I want to wait until she's less sleepy with it first.

DD1 has done really well today with calories. She came to me to remind me it was snack time and suggested a snack she could have, which was great. She struggled with anxiety, tummy ache and feeling sick at dinner, so we compromised and she only had to eat her meat. She ended the day on 2974 calories, which is fab.

I put the forms for her annual EHCP review in today. I have stated that I'm not sure the school is right for her, so I doubt that will go down brilliantly.

I wrote:
"DD1 is now under the care of a psychiatrist, taking antidepressant drugs and antipsychotic drugs. Current provision is not working for her and has not been for a long time. It is now time to stop ignoring her cries for help and to actually help her.

I am certain that xxxx School is doing their best by the children in their care. I am not convinced that this is the appropriate placement for DD1. I am absolutely sure that the provision for her needs to change, whether at xxxx School or elsewhere.

DD1 can not have this experience as her secondary school ‘story’. School is such an important and central experience for children and DD1 needs her story to change."

I hope they listen.

Hmmm....DD1 has just come to ask for melatonin because she can't sleep. I've had to say no because the psychiatrist wants her to have a break from it. We see the psych on Monday, so I'll talk to her then about the dose.

God everyone is having such a tough time right now..😔

@Stilllivinginazoo so sorry you've felt such disappointment with the help you'd hoped for. I can imagine how upsetting it must have been seeing your DD so distressed and fragile in the meeting today. But please don't give up. You will get through this somehow- although a bi#ch at the time, these experiences I'm sure make us tougher. ( even if we don't feel it). As the others here have said, the focus has to be on intake alone - nothing else can improve until it increases. Could their I2I ( home outreach)team allocate you somebody to work on developing more of a refeeding programme which slowly becomes a routine?

@Girlie sounds like you've had a mountain (or two) to climb to get to this point with your DDs ASC assessments. But I'm sure all your committment to pushing for things will pay off if you get the diagnosis. So immensely wrong that it has to be such a fight trying to get our kids the MH support that they need.

@lotts sorry you're having such hell with the exercise side of things..you sound like you're a match for ED though and you are managing to get through to DD, even if it's a painful process. I guess persistence is all we have here.

@lougle Great letter! Hope they pay attention. And ditto Lotts on is the colour thing available anywhere do you know? I need tools like that for DD, her communication is so limited at times.

Today not so good here. Schools letter is v topical Lougle. DD refused to go in today, after managing her first few days back there in months. Anxiety got the better of her just before leaving the house so I've been trying to think through ways to help her feel less overwhelmed by it all. Still awaiting SALT and cognitive psych reports from the IP unit to get sent to school to build our case for more help - or should I say any help - for her learning difficulties.

@Valleyofthedollymix i meant to say were in the same boat as you re DD's friends not knowing about ED. I'm trying to suggest that if she could confide in her closest friends things would be a little easier for her in some respects. We're making a little bit of progress - she's not quite so hostile around the subject - but I guess it takes time until they feel they're ready to share that and overcome the fear of being labelled & judged. DD is terrified of gossipy rumours abd really struggles with social anxiety so not a good combo

@Roolet12 I do hope you get somewhere. DD1's psych can't make the meeting for her because she finishes early on the day they are holding it. But she has said she'll write a letter.

The zones thing is similar to the picture here. All they do is say 'what does it look like when I'm red (shouting, swearing, kicking, shaking, etc.)' 'what will help when I'm red...' (space, punch a pillow, quiet, etc). Same for each of the other colours.

@Stilllivinginazoo I've been thinking about your DD. Could you agree with her one meal that you will tackle to start with. Allow her to stick to safety for all the other meals, but on that one meal she has to accept what you make? Then you could gradually expand it.

@Lougle thnks...DD is eons behind in everything and has no hope of ever catching up and coping with school unless some pretty fundamental help starts to happen. Thnks too for colour schema. Food for thought.

Thanks Lougle she had chips with it and a small amount of ketchup so I'm hoping that topped it up to more like 500 calories, I aim for dinner and pudding to be 1000 calories minimum!

I'm trying to work out how much her porridge is from my calculations the oats would be around 260 (going by the packet) the double cream two decent tablespoons worth so another 200ish plus topped up with ff milk so I'm hoping 500 calories? If she is eating all her snacks and lunch I reckon that would be around 700 calories.

So roughly 2200 a day I think.

That picture looks like it came from The Zones of Regulation book, I was recommended it for dd by an OT years ago and bought a copy. Unfortunately I never actually got round to reading it 😬 probably explains a lot 😉

Oh and I meant to say brilliant letter Lougle your dd is lucky to have you as her advocate.

That's impressive mental calorie counting @Girliefriendlikespuppies. I use MFP because i like it all documented.

Thanks for the encouragement re. my letter. I am just done being 'nice' about DD1 being failed.

On that note, @Roolet12 do you know that you can apply for an EHCP yourself? You don't need to wait for the school and the threshold is really low - they have to consider:

whether the child or young person has or may have special educational needs (“SEN”); and
whether they may need special educational provision to be made through an EHC plan.
If the answer to both of these questions is yes, they must carry out an EHC needs assessment.

I'd crack on and make a request for assessment.