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

Sorry - to clarify -the additional 200 calories is per walk...

Even on 2000 calories, DD1 is on bed rest/wheelchair. If she's not, she'll lose weight. 1000 calories is a strict diet and in fact, my fitness Pal wouldn't even calculate your potential weight loss/gain on less than 1200 calories - you'd just get a warning that your intake is unsafe.

@Stylinson I found this from a FB past on EDSUK
Find the weight needed to give 50% on the nhs BMI calculator for kids. So for instance I put in my DDs height and age/sex and it came out as 18th so I kept fiddling with the weight until I hit 50% when I pressed calculate!
So my Dd is 155.2cm and weighs 41.5kg. To get 50% on the nhs calualator takes 46.25kg
Then work ou their BMI ( weight in kg divided by height in m squared) then work out the 50% BMI
Then divide your DDs BMI by the 50% BMI and times by 100.
So for my DD
41.5/ (1.552)x (1.552)= 41.5/ 2.41= 17.22
50% BMI 46.25/ 2.41= 19.19
Wfh= 17.22/19.19 x100= 89.7%

This method gets me the same results as DDs KW

Although my Dd is only 89% wfh she is so much better, she has never been a 50%lie child....(was 9th for weight as a baby) but I am aiming higher as all I have read suggests they need a buffer to finally push through all the ED thoughts. And in my case so DD can grow and start puberty and in case they get ill and can’t eat for a few days etc.
So I am keeping on with her high cal diet until she is much nearer 100%.

I am so with everyone who is sick of planning, buying, preparing and pushing food. It feels like all I do. I'm worried about the return to school, but part of me is relieved that I'll have some respite from overseeing eating. Obviously I'll regret that relief if she loses weight.

In answer to the question about telling others, I'm very open with my friends who are a great support. But DD hasn't told hers - it's part of her character to be overly self-conscious and has contributed to the ED in the first place. I wish she would as then I'd be able to talk to the mothers of her four closest friends, but I feel I can't unless the friends know first.

The way I'm dealing with the return to school is thinking that it's only three weeks until the Easter holidays so is a good taster session before the summer term. She's going to miss Friday afternoons (PE) and if necessary there's another afternoon where she only has subjects she's not taking for GSCE. So we're starting off hoping for the best (4.5 days, no supervision), but with provisions made to scale it down (two afternoons off, supervision of meals and snacks).

@Lottsbiffandsmudge
@Lotts useful WFH calc, am sure I'll be using that more once DD is out. I agree about needing the buffer - both times DD has gone through upward weight cycles wenve not managed to get beyond 92% or so and the cognitions have remained strong- resulting in downward spirals afterwards. Id like to get ours to 95% plus if poss.
Like your DD we also need to consider hitting a level that's condusive to puberty happenning!. DDs triplet sis has just started her periods but DD seems a v long way off. IP have been promising a bone scan and full hormone assessment but taking forever.
@Valley my DD is incredibly self conscious too, it's always about fitting in and an overwhelming drive to be like her peers. As per your DD, I'm sure its contributed massively to her E.D..it often creates huge conflict with the A.N demanding one thing and social acceptance another.

Kept losing last bit so stsrting new message..
@Stilllivinginazoo DD has 2 same aged siblings (triplets) one of whom devours sugar like its going out of fashion and the other who himself is a recovered ( ish) A.N sufferer. So meal times can be interesting. DD currently follows quite rigid M.P timings as she needs the structure during home leave so its same as her I.P pattern. When home, she always prefers to sit in dinjng room and have space but doesn't mind me or DS keeping her company & helping distract her. Not keen on DH though...sends him packing usually.( Work in progress).
Due to lockdown the 2 sib's tend to eat b/fast & tea later than DD as the prescribed times are a unnaturally earlier for them. Means a shed load of time in the kitchen for me but can't seem to find a better way at the mo. Once DD fully discharged Im hopping we can relax times a little and encourage more meals together.

Thank you. That’s really helpful

@Stilllivinginazoo I used to work mine out manually until my dd12 found my meal plan and I thought all our hard work would be blown out if the water because by that time she was up to 1900/2000 calories (basically her final fortnights IP meal plan that I was trying to replicate). Fortunately it didn’t and she continued on the MP. But rather than write it down I use Nutracheck app - it costs £3 a month but it’s a godsend for me - it calculates everything and you can even scan bar codes and it will know the calories. It’s really tough pulling up the calorie intake. I always add butter to soup which can bump up the calories in it by 100 - every little helps ! I would never have got her to eat this much were it not for her IP stay - before that she was barely hitting 500 cals 😕

Happy (?) going back to school day for those affected. Mine seemed neither particularly excited nor anxious, which is good. I really can't see how DD will eat as much as she has been without our oversight but she's motivated by the threat of having to be overseen at school or come home early if she looks like losing weight.

She did drop 200g this week on our scales but it's still 3kg over all in about 7-8 weeks which I'll take. Another 3kg would make me feel a bit easier - supposedly she needs another 3 after that but we'll see.

I spoke to the therapist today who said two nice things - firstly how much better DD is looking. It's amazing the difference 3kg can make. Secondly that DD strikes her as being honest and open. Deviousness being a characteristic of ED, it's something to be celebrated. Good tip was that if she comes home and says 'oh I only had a salad for lunch as that's what my friends had', to praise her honesty rather than jumping on her for not eating enough.

Hope the children who went back to school today got on okay?

Dd had a tooth extracted this morning as part of her orthodontics work, it was very stressful and dd has been having appointments to build up to this as is so needle phobic. Anyway she managed it, still needs another one out but at least ones fine!!

I thought she would try and use it as an excuse to eat less today but she's actually done okay food wise.

Plan for school tomorrow all being well, the year head rang me and said dd can go to learning support for supervision with food. I spoke to dd about this and she was adamant she didn't want this, in the end we have agreed that she can eat with her friends but if she loses weight at next weigh in she will definitely have to be supervised.... no idea if I'm just setting her up to fail though 😕

DD has managed her first day. Seemed ok at lunch when she came home. Claimed to have eaten morning snack and ate lunch ok.
At pick up v subdued. I said did you not enjoy it and she sad not really as she hates feeling ‘special’. She had a usual day except for lunch and there is no way I am letting her navigate school lunch ahead of `Easter.
I think the HOY has asked her teachers to sit her next to a particular girl (who HOY thinks is nice) in the classes where she doesn’t have one of her best friends. Maybe she has picked up on this. It might not have become apparent until she had a few of those lessons (she had 4 today, 2 after lunch).
Anyway she has gone up the field with her dad so hoping he can get something out of her.
She can’t really not be ‘special’ at the moment. I guess she just needs to ride it out.
It is official that teenage girls are hard beeping work....my boys were never this much trouble and DS1 has had his own MH issues.....
Hope everyone’s day went ok and well done on the tooth extraction @Girliefriendlikespuppies DD

Well done for school returns!

DD1 says she's never hungry except sometimes in the middle of the night. Can that be true?

DD is going back tomorrow. Today was just LFT for her year, then home.

School have been pretty brill so far - have made the right noises and agreed our requests. Just got to see tomorrow how well it goes.

Not sure about the hunger thing Lougle. My DD says she is always hungry. That was one of the pressure points with her meal plan - she could fill herself up with 2 bags of salad and not have too many calories and higher calorie foods don’t fill her as much. At the start of her AN she was starving herself and hated it.

I sometimes wake up starving in the night Lougle I think my blood sugar drops, your dd could def be telling the truth.

Back in the shed having a sneaky ciggy 😔 I call them my stress buster - been going well so I’ve tried hard not to have one but tonight dd crying you come off MP she wants to be normal ! Grilling me on when it will end, promising she will address fear foods when she’s not on a MP - what weight do they want her to be etc etc Told her it’s not really my decision so I cannot tell her that as I don’t know myself because that is true ! So here I am she’s stomped off to bed. She’s 45kg at 167 height so way off - feel defeated but did my best to be supportive etc

Hi, I'm sorry to jump on this thread late, but just looking for some wise words/encouragement! DD has anorexia. She has been under CAMHS for 2 years now, who have been great in many respects. The nurse she sees is wonderful. She has been sent Inpatient during the summer to an NHS unit which ultimately I believe made her worse. I don't know whether it was that particular one, or it might be in my opinion a bunch of teenage girls who are all ill, being forced to live with each other, all feed off each others behaviours (excuse the pun!). She was there 3 months and did put on weight but got absolutely nowhere therapeutically. Back at camhs outpatient, her weight has severely dropped the past few weeks, I feel awful for not releasing the extent. they have suggested readmitting her. I am against this, especially this unit as it seems like a revolving door, and many current patients have been there multiple times. I don't want this for my daughter, to be in and out. CAMHS have said they only have funding for that particular place and nowhere else. They have said her weight does need to be managed in a higher level of care than home. I don't know where to argue and keep her out of there, let her go back? I am even willing to find somewhere private, inpatient, daypatient whatever at this point, but it seems to be difficult to find private kids ED units that haven't been bought up by the NHS? Sorry for a load of info just had to blurt it all out!!
Sending love to all you strong mums, this is a tough battle

Hi All, First psychiatrist appointment today - what should I expect?

afewtoomanychoices sorry I did not respond to your post. I wish I could help but i am at the beginning of our journey. I would also like to know the answers to your questions. I am happy to look privately or on NHS I just want to get DD well again. THe poor thing, she thinks she is 'fine' and its everyone else who has the problem.

Hi afew I am sorry things are so stressful, I am not sure what to suggest as if they are saying they want to admit her she must be quite poorly as there are very few beds and long waiting lists at the moment. Are you on the EDSUK Facebook page? You might get some advice on there. Is she eating at home and how old is she?

Dd has gone off to school and I have said a little prayer that I hope she gets on o.kay, she was so excited to see her friends so if nothing else seeing them should give her a boost. I have packed up her pack lunch, she had a little moan over the yogurt (I am not eating that/its too big) but I just reminded her that she needs to eat more at school and left it at that.

@Jojo2347 I get this a lot. When will I be ‘normal’ when will it be ‘over’. When can she go back to ‘doing what she wants’. I believe this is all the ED talking still I have now told her that this is her new normal. She will not go back to eating less. She will need at our around this calories for the foreseeable whilst she goes through puberty and grows etc.
I have also told her she won’t be going back to ‘normal’ exercise as with her compulsion I cannot see us letting go of that for a long time.
With regard to food I have said until she brings herself to face fear foods and is eating intuitively again she will be on some form of plan.
@SoTiredNeedHoliday at our first psychiatrist appointment the dr talked to DD about her views on her illness, mental state, physical state, what she finds hardest etc. Then she asked us (tbh DD didn’t say much as she didn’t at that point believe she was ill), she then prescribed olanzapine and called me weekly to check on side effects etc. We had a meds review after a month (this time on line) which was a similar set up to the initial appointment. Next review 3 months later. I think a lot of people are worried that their children will hoodwink the psychiatrist. Ours was not so easily fooled and put a lot of store by what we said.
@Girliefriendlikespuppies fingers crossed for your DD today. Mine has gone in again. Seemed to perk up yest eve after being sullen after school. I guess it s a big adjustment.
@afewtoomanychoices so sorry to hear your difficult story. DD has not been an inpatient so not really able to help much. But therapeutically my DD has not received any help since diagnosis and so we are just continuing refeeding and the weight is helping her mood. Her AN was not so entrenched perhaps as your DDs. Others. On here have had inpatient so should be able to add more. I second joining ESDUK face book group great admins who really know their stuff. They also have Zoom drop ins `tubes and Thurs if you want to pick their brains.

Welcome to the thread @afewtoomanychoices. It's really hard to know what is best sometimes, isn't it? My what is your DD's weight for height right now? My instinct, having worked for the NHS and knowing that there is a huge crisis in mental health, is that if they are suggesting inpatient, you should seriously consider it. There is such a crisis that when a parent on EDSUK phoned the Priory hospital, they said that they had turned all their beds over to the NHS because they were just overwhelmed with need.

For all of us struggling, this is a new day. DD1 was hovering at 1500 cals yesterday, but DH managed to persuade her to have a brownie before bed, so that got us up to 1700 cals.

@SoTiredNeedHoliday at DD1's first appointment, the psychiatrist just asked how DD1 was feeling and talked about her eating difficulties. I found the best approach was to completely let her have her say from her perspective, but then asking DD1 a question that highlighted that I had a different version of events. E.g she said 'I wouldn't be so skinny if Mum didn't make me weigh my cereal and let me have however much i wanted.' I said 'DD1 do you remember why we started weighing cereal? Do you remember that you were pouring a huge bowl of cereal, adding loads of milk and then eating just one spoonful?' That allowed the psychiatrist to say 'that sounds a bit different, doesn't it, DD1?' Don't be afraid to talk about meds if you think it will help. I said 'do you think her mood will improve on its own, or do you think it might need a bit of help?' and the psychiatrist immediately said 'I've been thinking we might need to start some medication.'

@Girliefriendlikespuppies I hope she gets on ok, let us know how it went.

DD1 has a nurse appointment today. Weigh in and obs. We still haven't had the supplements prescribed 2 weeks ago. We're running out of Fluoxetine, because she's only seen the Psychiatrist once in the last month. We're a month after hospital discharge and no further forward.

sotiredgood luck with app today
Lougleregarding fluoxetine,can't the g.p take over repeats for that?my eldest is under camhs(anxiety and depression) and was on sertraline

I think they could, if the psychiatrist asked them to, but she's not on a proper dose yet because she's only seen the Psychiatrist once.