Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread 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

Basilbrush. So sorry to hear of your dds struggles. She sounds very similar to my dd16. She started showing signs of disordered eating, calorie counting and suddenly going vegetarian. I brushed it off for a couple of months, assuming it was a phase, then realised we needed help when her periods stopped, her clothes were hanging off her and she couldn't do full days at school through sheer exhaustion.

I self referred my dd to camhs. The form was on the website. Not sure if that's dependent on your area. They contacted me in a few days and contacted the gp on her behalf. Within a week she had her obs done and an online camhs assessment the following week and we've now been going weekly for obs.

We're a few weeks into getting help now. Slow progress is being made. Communication between us is better now and she's either maintaining or gaining a small amount weekly. She said today 'I'm glad I feel better'.

It's impossible to cope with this alone. Just be prepared for it to be very difficult while you adjust to taking control of meals. I'm not sure how I'd have done it without camhs and the amazing people here on this thread. It helps enormously to know you're not alone.

@basilbrush I agree do not wait. She will not turn a corner and suddenly eat. The symptoms you describe are classic for anorexia. She will not get better on her own.
Depending on where you live you might be able to self refer to your ED team and/ or CAMHS.
Also Get her to the doctor for height, weight, blood pressure, standing and sitting heart rate (and the change when she goes sitting to standing) and an ECG.
She may not appear physically unwell but she may well be as often it isn't obvious until it is IYSWIM. And the blue fingers etc are a clear physical symptom.
I don't want to alarm you but she is clearly unwell. It's hard to go accept and get past that 'I am making a fuss' feeling but you need to.
Sit her down and explain that from all the evidence you have gathered and the research you have done in your opinion she is quite unwell. If she refuses to go I am afraid you have to insist. She doesn't want to go because her ED knows it will be found out. Altho many GPs back up the ED and don't refer or take it seriously he should refer you as that is the clinical path for a child presenting with these symptoms..its not absolute weight that matters but the amount of loss, the speed, the psychological behaviours and the physical exam. Please insist. Read the NICE guidelines and look at MARSIPAN before you go. (I think they are at the top of this thread?).
My DD was 13 when she was diagnosed and turned 14 whilst ill. She had not started her periods either. That's because switching on the process requires huge numbers of calories and she wasn't eating them. My DD always ate 3 meals a day. It was no where near enough to fuel her development, growth or indeed her life and she lost weight rapidly. And developed a dangerous heart phase.
She is fully recovered. It took 18m of hard work. And it started with admiting to myself that there was an issue.
You have made the first step coming here. So your gut knows there is something wrong. Listen to it.
Please use us for help, support and advice. We have all been/ are there and made all the same mistakes and had success and set backs.
Good luck!

Basil I echo what all the other posters are saying, sadly it doesn't sound like your dd is in the early stages of an ED it sounds like she's very much in the grips of anorexia.

Tbh it may be an idea to take her to a&e, blue lips and fingers could point towards a sign the heart is massively struggling and heart failure is a real risk.

Even though she is eating a restrictive diet this does not mean the anorexia is any less serious. I minimised how unwell my dd was for exactly the same reason.

Can you join the FB group? EDSUK, they have some useful files on what to ask for at the Drs or a&e and also how to get FBT (family based treatment) started.

Start looking at Eva Musby online and order her book if you can.

You can also tell her that being vegetarian is no longer an option. Any decisions to become vegetarian or vegan when they are in the grips of an ED are just a ploy to eat less so can't be accepted.

And just to add, you can ask that she is blind weighed however you need to know her weight to get an idea of where she is. In children weight for height is used to give a rough idea of where your child is in relation to other children of the same age and height.

It's a useful barometer and starting point.

Your dd sounds desperately unwell so please do act on our advice. We've all been where you are now sadly and the quicker you take control the quicker you can turn things around.

Thank you all for your sound advice, I really appreciate it. I have checked and I cannot self-refer to CAMHS in my region, it has to be done by a health professional.

I will contact the GP surgery today.

Good luck and don't stand for being fobbed off

@basilbrush so sorry you are going through this but early intervention is key and your daughter is still young enough to accepthelp. Our daughter is 18 so this is proving a huge nightmare.

So we went back to doctor today and I ended up in tears as I am so frustrated with her. They took bloods and all ok and the also did ECG and that was fine so she said she is not critical so they won't be doing anything yet. I asked her did my DD have to be nearly dead before they will take notice? She told me to self refer to NEDR myself in Dublin This place is a private place so is going to cost a fortune. I also said my DD is losing weight rapidly and she still said nothing we can do only go through the process. I then said that my dd said last night that she wanted to go asleep and never wake up and could she refer me to a mental health physcologist and she still said no, that we have to start treating the ED? She also said " I can send you in to hospital but they are not going to do anything either. I cried and I am not proud to say but I bawled and I shouted and she put me outside the room and cntinued to talk to my daughter. She is seeing her again next Tuesday and asked her to try eat a few more calories by the weekend? I said " she is not going to do that are you DD" and the doctor saud well she has to try? what am I going to do next? I am so done, so so done with all of this. I have not slept or eaten proprly myself in days. I am so anfry with my daughter too. I know it is not her fault but I am at breaking point myself.

Sorry about typos. I can barely see what I am doing here from crying

@Snuggleworm could you take her to A&E? My GP just contacted the dietician. When I took her to A& E she was admitted immediately.

No because the doctor said she is not sick enough for A & E and they won't admit her. We were in A & E 2 weeks ago. For 13 hours on the Sat and 15 hours on the Sunday and they still did not admit her. Bloods and ECG were fine at doctors today. I am trying to change GP's as we speak.

@Snuggleworm did you try Orri (see my previous link)?

@Havehope21 I didn't no, I don't know how to search thread either. My apologies

@Snuggleworm don't worry - this is the link www.orri-uk.com/ or you can google 'Orri eating disorders'. They have an online and in person options. Although they are private, there might be other options and they will be able to offer advice. I would also recommend the videos on their vimeo channel, following on their instagram (they have very good instagram lives) and webinars, and facebook. Sending you lots of love.

@Snuggleworm oh poor you. That is so frustrating and I can totally see why you are feeling so desperate.
Can I just say that my GP looked at my DDs ECG and gave her the all clear but then we got a panicked call from the ED team as their consultant had noticed a serious abnormality often associated with EDs (a long reset phase). Unless your GP knows what to look for it may not be fine at all.
Has she been eating any more calories in the last few days? What is her calorie in take do you think if you post what she has eaten I can try to work it out?
I think you need to remove yourself from the situation for a little while. Can you take the night off. Go out, have a bath, spend time with a friend or your partner? The caring and mental load of this illness is huge and respite is needed at times. It's not much but an evening doing something else might help you feel able to face it all again tomorrow?

@Havehope21 thank you, I will take a look.

@LottsbiffandsmudgeI darent even say that to GP about her ECG as the nurse in the practice did it and this GP is annoyd with me as it is and she will def say I am underming her if I say that.

So far today my daughter has eaten a full punnet of strawberries and a zero fat yougurt. A coffee and a coke zero.

I do not understand how her bloods are all fine and her ECG is fine though? She is so thin and her ribs, shoulder blades spine is sticking out really badly.

I swear the doctor was making me feel ike I was crazy.

We do not even have an ED team. That is how bad my doctor is. They have been dismissing my DD's menatal health issues for months and it was only when I documentd evrything in writing that they took me seriously. Well not even seriously as it turns out.

@Snuggleworm I'm so sorry you're not getting the support you need. I don't even know what to suggest. Could you go to a different a&e?

@Snuggleworm have you looked at www.bodywhys.ie/ this organisation which may have options relevant to your location?

Another point to raise @Snuggleworm would be her rate of weight loss which is a severity marker, unrelated to actual weight. This is from the junior marsipan guidelines.

Apologies all for dropping in, I am from the adult group but have dipped in and out of yours. As a parent myself now, I can sympathise with the horrors of a parent witnessing their DCs suffering.

@nutmegx that's a very good point, that (the huge weightloss in a very short amount of time) is exactly what put my daughter into the treatment pathways when, at the time, her BMI and other indicators might not have done. Sadly, as is often the case, the weight loss continued and so she now would meet other criteria for treatment, but the initial weight loss was what attracted the attention of the CAHMS assessor, she was actually in hospital for MH reasons as it was only a couple of months into her weight loss episode and so we hadn't even got to the doctors at that point, I was still wondering if it might all go away (answer: it didn't).

And, thank you for popping over, all insight incredibly welcome:)

@Snuggleworm it can take a while before the health indicators start to be affected, my daughter was the same, fine, fine, fine, then not fine. The CAHMS specialist, who we only spoke with once, said this is very typical as a trajectory, that these teens seem fine and then suddenly there are issues, and that's what happened to my dd, so BP dropped, cold hands and feet, circulatory issues, then issues related to purging and so forth. I think getting the NICE guidelines or whatever the regulations are in your region and holding them in front of the dr is the way to go or paying privately (sadly).

It is so much harder when they are over 18. Even my dd says she's going to quit attending (nearly 17) occasionally, and I use all my powers of persuasion to keep her with the programme which is difficult as they are telling her things she doesn't want to hear and constantly quite negative about her non-progress which upsets her. Don't give up though, your dd will be both hearing you and not hearing you all at the same time, and I think she will eventually hear that she needs help and treatment. I wouldn't be ashamed to ask her to do it for you at this stage, her own needs are falling down the list.

Hi all. I posted a while ago as I was concerned about the early signs of ED with DD with added complication that we were due to go on holiday with my niece who is recovering from very serious AN (about 4 years on, still extremely skinny) and the advice was there were warning signs with DD and to consider not doing the holiday.

DD seemed to improve before holiday and to our eyes was eating ok, regained a bit of weight and seemed generally ok (as it was hols we had been seeing her eat and snack etc).

Sadly the holiday does seem to have been a trigger for things to escalate especially seeing our niece. She was noticably restricting eg didn't eat Icecream at all (only sorbet) but had flashes of normality like ordering a rocky road.

When we got back she had a bit of a breakdown and admitted lots to me that during the past couple of school terms she had been lying about eating breakfast at school and had been throwing her lunch away. She feels fat, hates how she looks, terrified of gaining weight.

After telling me this it seems to have got worse and she's insisted in lots of healthy food swaps eg won't eat normal crisps, will only eat whole meal wraps instead of bread

I've responded by going to gp -bmi is 17.5 so low but not yet dangerous. We've had referral to a private psychiatrist which is end of the month (gp was very sceptical about having any luck through CAHMS any time soon - frustrating as we are very close to the maudsley) and I've taken control of Meals and snacks.

She's mostly been ok with me taking control but lots of bargaining, I'm struggling to get her to finish stuff. And I have no idea at this stage/weight what or how much she should be eating? Am I doing the right thing? She's admitted left to her own devices she won't eat. She still looks like she's losing as well (should I be weighing her? She doesn't want to)

We spoke to school yesterday and (on psychiatrist advice until we can see him) im going to meet her every day for lunch. She does a lot of dance (including at school) which is restarting which I'm also concerned about.

Sorry for long message. Basically I know we've intervened at the right point before it's gotten really serious, however I don't really know if my approach is right. Will really appreciate having this forum to help me. Any advice on our current situation really appreciated. My niece was sectioned, tube fed, multiple suicide attempts etc so I've seen how badly this horrible diseases can affect people 😞

@LittlePickleHead first of all, what does she know about your niece?