Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

DD1's psych requested a hormone level when her period had restarted to see if it was a true ovulatory period. It would be tricky to time if there's no period to indicate when ovulation should be.

The dietitian talked about true periods, she said it can take ages after their periods come back for them to actually release an egg.

Hope you're okay nan, I remember the overwhelming hideousness of the early days after diagnosis. It's like being hit by a bus but being told your child's life is now in your hands 😢

We're plodding on here, dds had a complete head fit this morning as has lost an important piece of work. Apparently that means she will fail the gcse, not get into college and may as well give up on life now 😶

Catastrophising much??

That said I gave her pancakes for lunch with biscoffee spread and banana, was expecting some comment about it but she sat and ate most of it no issue. I do wonder if I'm more scared of pushing her than she is sometimes.

Had a call from CAMHS yesterday offering appointment for first thing Monday with Eating Disorder Service. That’s pretty quick given Practice nurse only sent it through on Thursday after ECG & blood results.

anyone here had sando k prescribed? dd is so bad at taking it as prescribed and the low potassium is causes heart issues now…very scary.

@ComplexNeeds that's great news.

@Cloudsarebright yes, DD1 had Sando K, Sando Phos and magnesium when she was in hospital, IIRC.

A little tip, if she will drink water/juice - dissolve the Sando K in a tiny amount of water/juice. Get her to drink it like a shot, then follow with something she's happy to drink to take the taste away.

When they say ‘no school’ does that mean no school work? Or just not physically attending school? And if the latter how good are your schools at giving them work? I’m worried she’ll be a bit bored!
At 79% wfh I think she’s on the cusp of ‘no school’. I’m secretly hoping that they do say no school attendance as I think we need a good kickstart. And her a wake up call.

@Complexneeds

When they say ‘no school’ does that mean no school work? Or just not physically attending school? And if the latter how good are your schools at giving them work? I’m worried she’ll be a bit bored! At 79% wfh I think she’s on the cusp of ‘no school’. I’m secretly hoping that they do say no school attendance as I think we need a good kickstart. And her a wake up call.

For DD1 it was no school and no school work, but she goes to a special school. I think if your DD was officially prevented from attending school due to her health then either the school would have to provide online learning, or they would have to arrange tutoring.

The key is that if they are so underweight, every single calorie needs to go towards weight restoration. Any activity is a waste of precious calories at that stage.

DD1 had a wheelchair from January-April 2021. In that time she gained 12% WFH, so she was allowed to walk after that. She returned to school for a few hours per week, initially, in May, then built up slowly until she was full time in July. In September she went back to PE and Performing Arts.

@ComplexNeeds no school for us meant no school at all. Dd was first admitted to hospital in August 2020 and was only well enough to go back to school part time in September 2021

@Complexneeds

When they say ‘no school’ does that mean no school work? Or just not physically attending school? And if the latter how good are your schools at giving them work? I’m worried she’ll be a bit bored! At 79% wfh I think she’s on the cusp of ‘no school’. I’m secretly hoping that they do say no school attendance as I think we need a good kickstart. And her a wake up call.

No school means no school generally as even reading and school work takes energy. Plus a starved brain cant function and retain information well. My dd has almost no memories of the early days of refeeding which is just as well 🥴

I didn't have to worry about school as dd was at her worse during the height of lockdowns but she definitely wouldn't have been well enough to go initially.

To keep dd distracted and save her from boredom she did puzzles, sequin art kits, paint by numbers etc

DD has had sando k for nearly 2 years now, in the community and in inpatient settings. Her psychiatrist and rest of the camhs team is of the belief that stopping purging is not going to be possible for a while now because of the impact it would have to her mental health and safety - had reduction I suppose. But we’re at a point where she’s being sent from appointments very frequently to a&e for IV infusions and it just seems there’s no end in sight! She’s going to be 18 in the next couple of months and lives so independently I’m just not sure what I can be doing to help.

Clouds it sounds like they're enabling the ED tbh, frequent purging with be damaging her mental health and is potentially catastrophic for her physical health 😕 I'd be talking to the team about a plan that involves no purging. Are you on the fb page? They will be able to give you lots of advice as well.

Generally I think with purging it's sticking to FBT 3 plus 3 and then using loads of distraction after food.

Really really difficult with an older teen though.

Quick update.
DDs assessment went well. Very kind clinicians who explained things well. No diagnosis as need to do an extended assessment. Her ADHD meds complicate things. But for the time being no school no sport and the extended assessment in 2 weeks (then it’s half term anyway). She’s 78.5% so doesn’t need to gain much tbf. She cried as hadn’t been believing me and thought I was exaggerating but she’s ok now and tucking into a MacDs. She even ordered a donut as needs a pud with every meal. Hope I’m not being naive but I’m really hoping we’ve caught this early.
We don’t usually do puds or snacks really. What snacks do you give yours please? I’m thinking it could easily be a lot of chocolate & crisps if we’re not careful.

That sounds like a positive day for you complex - Re snacks, we go through phases - but breakfast bars (belvita have some decent calorie levels in some of theirs), apples and maltesers are a current go to, chocolate covered rice cakes, yoghurt and granola. Savoury snacks were harder for us but included nuts, savoury biscuits, min sausage rolls, mini cheese rolls, savoury muffins

@ComplexNeeds that sounds like a good step forward! Tbh at this stage I was told that all calories are good calories. DD1 sustained the chocolate making industry for months. Once she was nearing a healthy weight, we started to focus on nutrition a bit more but in the early days anything she would eat, she got.

Ha! Sustaining the chocolate industry reminded me of when we found a bar that DD liked (Boka bars) and I ended up ordering a box of each flavour she liked - there were 24 in each box - so we had 72 of them in the house!!. The inevitable happened and she went off the bars so the food bank had an interesting array of cereal bars in my donation....

It was very positive myrtle. I think time away from school and sport will give us the kickstart needed. She’s currently on board with it all. But only time will tell how realistic I’m being.
That’s good to know lougle thanks!

Quick update. DD admitted to Alder Hey today. Heart rate even lower, but she still won't eat. Hoping they'll start tubes soon.

Definitely bin any beliefs about 'healthy/unhealthy' foods, all food is nutrition and for someone trying to gain weight the best foods are calorie dense ones so chocolate, cake, biscuits etc are fantastic.

Complex Aldi do lots of brilliant puddings, things like sponge pudding, profiteroles, tiramisu, cheesecake etc. Dd has a large pudding every evening and I drench everything in double cream.

Double cream I consider to be a miracle food as it's so calorie heavy, full of brain healing fats and goes in pretty much everything 😁

Snacks are tricky for my dd but things like homemade muffins or flapjacks would be good and pack a good calorie punch. If your dd likes chocolate bars then go for that otherwise cereal bars that are over 200 cals.

I'm glad your dd is being compliant, her wfh is very low though so is only consider her ready for school once she's gained weight regularly and will definitely eat plenty at school.

Cross post with Nan I was wondering how you were doing, sending virtual hugs.

@NanFlanders although scary, hospital is the best place for her.

I can't remember in fine detail the tube feeding protocol - I think for us it was a day of not completing or refusing meant moving to tube feeding.

However, we (after discussion with DD) asked to move to tube feeding as DD was so weak and exhausted - she was just sleeping all the time and her heart rate was low to mid 30s. It wasn't pleasant but it gave her a bit of breathing space so don't be afraid to ask for proactive move to tube if you think that will work best.
We were able to have one parent with DD for her hospitalisations so DH and I would do 24hrs on rota doing a handover in the hospital carpark - truly surreal times. Are you able/planning to stay with her?

I hope it goes well for you and DD

Nan with my DD it was tube if any part of the meal wasn't eaten - they would supplement - so half the meal eaten would be the remaining calories by tube etc.

As for me, I'm sitting here feeling utterly wretched. I caught her in the bathroom this evening at around 8pm and although she denies it, it smelt strongly of vomit in there, and one of her hands did too. We are obviously keeping her with us after dinner but slipped up tonight as we’d had to pop out to Waitrose to get things for her foodtech and I banished her from the kitchen as I unpacked, thinking that as it was about 40 minutes since she’d finished dinner it would be ok.

Any advice? We told her that she will be with us for an hour after meals but how do we do this with school? She and I have talked about it tonight and I have explained the risks to her health, nails, teeth, gut etc. And that she smells of vomit which is awful.

We are so close to beating this. But this feels like a huge setback.

She did admit it at bedtime and apologised for making me sad.

ironically, today was the day I'd planned and executed a huge surprise for her - a new double bed to reward her for all the hard work she's done.; She was so excited and so happy, and ate a really good dinner, but felt sick afterwards. About 45 minutes after dinner she was sick. I wonder how much of that dinner her body had absorbed.

:(

Thanks @Girliefriendlikespuppies and @myrtleWilson. Yes, fortunately I can stay with her - there's even quite a nice sofa bed.. I might request tube feeding actually. She's getting an assessment tomorrow, so I'll speak to the consultant then.

Aww dark that's horrible but I would take it as a positive that dd did admit it and felt empathy for you. For me that says she wants you to know so you can help her. If it were me id have an open door policy, maybe even take bathroom doors off hinges, absolutely no bathroom for 1-2 hours post meals and snacks and lots of distractions post meals. You might be hitting extinction burst which kicks in between 95-99% wfh and is absolutely shit.

It's like you can see the finishing line but the ED wants to throw everything it has you one last time 😢

I feel we're mostly past it now but I'm careful not to become complacent, I'm well aware that EDs lurk and sneak in at any opportunity.

@DarkBlueEyes - with your detail about the nice surprise I think I'm now less surprised about the vomiting moment. ED's (in our experience) really try hard when under pressure - DD had a bad day last week when the ED was going crazy in her head but that was because the ED was mightily pissed off about how good DD's life is at the moment. My advice would be to keep talking and use tonight as an illustration of how the ED wants nothing more than to squish her down again and take away all the good things that are starting to open up for her.

Nan definitely ask re tube feeding, the ED needs to know it can't win. One of the parents on the fb page commented today that what's worked for her is the ward agreeing to an open door policy so the minute her dd refused a meal or a snack they took her straight in for a tube feed. The threat of it was actually enough to get her dd to eat (I think they only had to actually follow through once.)

Your dd is definitely in the right place and hopefully right at the beginning of her recovery journey. I hope you get some kip and remember to look after yourself, you need to eat as well!!

If you haven't already get a copy of Eva Musbys book and start gearing up for when your dd does come home. I think it's Eva Musby who talks about 'clearing the decks' by which she means empty your life of as much as possible. The treatment and recovery from an ED takes a lot of time, and energy and focus. Sadly everything and everyone else has to take a back seat and wait for you to come out the other side.