Parents of children with very low weight/anorexia, support

[PeaceOfWildThings]

Am Inthe only one?

I've looked on b:eat and there are no support groups for carers in my area. Am I the only one who could do with a thread where we can support one another here on Mumsnet?

Yes, we have had weight go up, down down, up, down down five times so far, it is really hard while they are against putting weight on themselves. I'm glad when DD's weight goes up, of course, but always concerned it is water weight/due to restrictions and starvation from previous week.

How is everyone getting on through the holidays?

We've had ups and downs. Trying to negotiate eating by taking phone at mealtimes, coupled by things to go out and do in the afternoons. It's a bit hit and miss, but we are getting there and DD2 might have made a breakthrough, there seems to be no concealment and hiding food now, much less crumbing etc. I've agreed to make food choices that are slightly easier for her to manage in exchange for this and sustained weight gain. If she gains weight for 4-6 weeks, then we can look at sports and activities being resumed, monitor weight through that to then see if she's ready to start taking on her own lunches and snacks.

Only a week and a half left of summer holidays here!!
Last weeks FBT session was lunch with the therapists observing- a bit stressful for all of us. Have had a mixed week; some horrendous meals and some that have been just hard but the calories are going in and I'm doing my upmost to make sure they stay in!! DDs mood switches between screaming banshee and Miss Congeniality.

A real low point was discovering she was looking at 'Pro Ana' websites. I didn't even know they existed. I was so angry that when she began to protest at eating breakfast, I just said " Don't even think about moaning- get it eaten now!" No cajoling was required that morning!!

Does anyone else claim any type of Benefits whilst unable to work? I am a sessional worker ( zero hrs contract) so if I don't work, I don't get paid. I have looked on the Gov Benefits site but nothing seems applicable.

Stay strong everyone

I have similar working conditions, but haven't looked into benefits because my husband earns enough for us to get by just now. I hope you can get some help with that. If you are in Scotland, the benefits system might be different, and I suspect better (more in your favour) than England.

Well we had a dramatic turn of events at the weekend with DD2 refusing to eat what I was giving her, refusing to get enough for herself, then climbing out of a window and running away for the best part of a day. (I've said I'll call the police if she does that again, she isn't 16 yet.)

She didn't eat for 24 hours, missed all those snacks and meals...and has refused to eat breakfasts and lunches I prepare for her since.
To top it all, her ed counsellor is off sick, so we didn't have a proper appointment. She's lost nearly 4 lb in weight in a week! She's been wanting to exercise more too. She says she feels like she's in prison, or being punished. No amount to persuasion was going to get her eating what I make for her. I took Monday off from the whole thing and let her get her own food. It wasn't enough, but better than battles resulting in no intake at all. Tuesday we came to a truce and watched a lot of TV together.

So... We have moved the boundaries. She is making her breakfasts and lunches and I'm giving advice and suggestions. She's making us both sandwiches for lunch just now. (We're going out to a park this afternoon, if lunch gets eaten).

Wow- that sounds hard going Peace. I hope the new arrangements are working for you both.

Camhs apt for us today. 1kg weight gain, but of course DD was distraught. She admitted once home (was asked at clinic) that she is still self harming and having suicidal thoughts but is ok with me emailing this info to our counsellor. Think she just feels uncomfortable saying it out loud in front of everyone. I'm still not sure what came first- did low mood lead to the anorexia or is the low mood because of the anorexia?? A bit of both maybe?

On Wed eve she confessed to still purging which knocked the stuffing out of me a bit. I thought we had been SOOOO vigilant. I just felt done in, that there was nothing left of me that I could give to 'the fight'. Thurs was a crap day! I just couldn't face a battle over 3 snacks and 3 meals.
But today was a brand new day and that is going to be my Mantra till the 'war' is over.
Take Care

Desperate for some help here.

DD is 13 and has become progressively more fussy with food over the past few months. At the beginning of the summer holidays she confessed to me that she hasn't eaten anything at school since Easter. As she has only a small breakfast (never been a big breakfast eater) and sometimes has "eaten too much lunch" to want much dinner, I realised we have a big problem.

Over the past few weeks it has gotten far worse. We saw a Dr on Monday who diagnosed anorexia. She is 5ft and 5 stone. Her bmi is 14.1. We saw a therapist yesterday who was great and we will see again next week, he has written to her Dr asking them to arrange ecg, etc.

But she's barely eaten today (maybe 500 cals max) and I'm trying hard to hold it together. She's also pretty much stopped drinking. I've managed to get her to drink a small bottle of water today by literally policing her and demanding she does. She wouldn't drink anymore than that. At this rate I can see her ending up in hospital really quickly.

Hi Toast, am so sorry you are going through this but you are taking positive steps.

Do you have a hospital appointment? My dd was borderline hospital admission on her first visit, I'm surprised at your dds weight/bmi people aren't suggesting this.

To state the obvious, your dd needs calories, any way you can get them down her. Try to steer her away from water, she needs hot chocolate made with milk, milkshakes, try persuading her to have a biscuit with every drink. Calories are her friend not her enemy. I started a thread a while back in this topic about high calorie foods, may be useful.

I know all of this is easier said than done because I've had to do it along with the other posters on this thread. Keep posting, as you can see, there are a lot of us dealing with similar situations.

Toast, this is a good website for information.

www.b-eat.co.uk/about-eating-disorders/types-of-eating-disorder/anorexia?gclid=CPXonvDOqMcCFeiE2wod7X

I would seriously be looking to make an appointment urgently with your gp surgery for ecg and bloods.

Hi Toast.
I am about 7weeks further down the road on which you are about to travel.
Its not a nice road. There are lots of hills to climb with very few easy bits! But we keep going because we know that the view at the end (happy and healthy children) is just the most rewarding and beautiful thing ever.

We had almost daily appointments with various professionals in the beginning. Gather as much emotional and practical support as you can- you will need it.

Take heart when a meal goes well and don't dwell on the bad ones, just put them behind you and start again a fresh with the next meal.

Expect tears, tantrums, shouting, lying, deviousness and any other behaviour you didn't think your DD was capable of. But remember- its the Anorexia that is making her behave this way.

As Calm said, get calories into her anyway you can. Butter and cream are your friend! Don't discuss what ingredients are in the food; one of my stock phrases is " It's just what your body needs right now"

I find that the longer the gap in between snacks/meals, the harder it is, so breakfast is always a tricky meal. Try to go no longer than 1.5/2hrs in between eating.

Some days it will feel like each meal/snack rolls straight into the next as it takes soooo long to get them to eat!

If you give an inch, Anorexia will try and take a mile. It is devious and will 'change the rules' without notice. You have to be really tough. It helps me to try and visualise it as a playground bully- its a bit scary to stand up to it but the more you do, the quicker it backs down!

Don't ask your DD to eat and drink- Tell her she HAS TO eat and drink, that she has no choice at the moment in what or when she eats. That way you are taking control back from the Anorexia.

I would recommend the book : Anorexia and other Eating Disorders- How to help your child eat well and be well. By Eva Musby.

It is Bloody Hard and turns the world upside down but we will get through this. I know there is no easy way but we continue to take those baby steps along this road-we don't have a choice.

Take care and keep posting, even if it is just for a moan- its helps!!

I weighed dd this morning, first time since Mon. She's lost 2lb since then.

She has eaten some food today but it has been a huge hassle getting it in her. Her sisters are getting very affected by it, it's so difficult to give them enough attention too.

I told her if she ate a specified amount today we wouldn't go to the drs, it's not that I'm trying to avoid it but it's horrendously difficult to get an appointment at my surgery.

Any fluids other than water (or half glass of juice at lunchtime) steadfastly refused.

I went to Holland and Barrett today to see if they did any protein shakes or similar. But they only sell them for adults. The woman there was lovely, telling DD really good foods to eat and found me some vitamins for her. Apparently zinc deficiency is often linked to anorexia?

I will look at those sites later, I'm shattered from dealing with her today.

Toast, in the nicest possible way your dd cannot afford to lose any weight at all. Please do not bargain with her about food and doctors appointments, it is non negotiable, these people will save your dds life, literally, they did with my dd.

Sorry I meant wouldn't go to the drs today! Not wouldn't go at all.

just re-read your opening post and a few questions..

your dd is 5 stone, 14.1 bmi:

you saw gp on Monday - they should have organised ecg and bloods then, are they not concerned?
you saw therapist - what did they say re weight/bmi?
how is your dd functioning? my dd couldn't spell her name correctly on a GCSE exam paper this summer

Toast Hide/get rid of the scales. She will be weighed at the Hospital/clinic. It is one less thing for her to torture herself about at home.

Rope in other family members to help if you can. I have 2 other children as well and I was really lucky that my family ( who live 200miles away) were able to take it in turns to come up to ours or take the other 2 away for a few days.

It is all consuming taking care of an anorexic. You must take care of yourself too so that you have the strength to get through this.

Get her to the GP. Demand an urgent apt if you have to. Your DDs life may depend on it.

Stay Strong

GP was fairly crap tbh. Said she was anorexic and barked a few questions at her while she cried. I had already found a therapist (recommended to me) so just asked for a referral letter so private medical insurance would cover.

Therapist wrote to Dr asking for bloods etc to be done and said drs would contact us (?). Therapist felt that it is anxiety rather than weight loss driven so if we can tackle anxiety we can sort it.

Dd is functioning ok, although she can no longer do a sport she enjoys and has gone from being very sociable to ignoring her friends for weeks. She has turned very child like.

No family help available. Going through divorce at moment (therapist feels this is the cause) and STBEH is not helpful at all. She spent the week with him a few weeks ago with him making food a very big issue and she was very unhappy when she got home. He now sits over her at mealtimes crying if she won't eat. Actually crying most of the time at how scary it is. I have gone into matter of fact calm mode but am terrified.

Toast, in your situation I would take my dd to A & E. Tell them she is diagnosed anorexic and you are concerned. They will do ecg and bloods and you will be "in the system",ie referred to paediatric hospital team.

Our camhs team liaise with the hospital team so everyone is on board and knows the medical and mental well being.

At 5ft7, 7stone 2, 16 bmi, my dd was told by a hospital doctor that she was dangerously underweight and borderline hospital admission.

I was convinced that GCSE exam stress was the trigger, 3 months on I know otherwise .

Any other posters from this thread still around?! I found rhings were tricky for us over the summer, then there was the MN hacking debacle.

Update on DD2 is that her counsellor is putting wheels in motion to have her admitted to hospital, assessed by a specialist adolescent unit and get... sectioned (as she is still under 16). She won't eat enough and has been stringing us along, refusing to eat what I make for her, refusing to engage with family based treatment.

Can't believe it's come to this, but am also relieved, as it is so hard to see her so ill like this. Just knowing that she hasn't had a period for over 7 months is a sign of how much strain her body must be under.

DD admitted to MH unit as an inpatient. Could do with a hand to hold...

Hi Peace- I'm still here.
So sorry to read your latest update. I know you must have mixed feelings about a hospital admission but she will be safe and you can 'breathe' for a little while.
Is the IP unit close by?
Have you been on the ATDT forum? There are lots of very experienced parents on there who have been through this.
This is a bl**dy awful condition for our children to go through ( and families!) but I am here to hand hold anytime

Thank you, lovely! Yes, it is for the best.

It's not nearby, no. A long drive on tricky country roads and through heavy traffic.

I seem to be developing a badly timed chest infection, and breathing isn't as easy as it should be, annoyingly.

ATDT forum? I'll have to look that up. Thanks

That's a shame that the unit is not close to home. Yet another thing to organise/stress about/impact on the rest of the family!!

Have you got anything for the chest infection? Please take care of yourself and get some rest when you can (easier said than done I know!!)

ATDT =Around The Dinner Table is an international parents forum on the Feast website- an excellent resource for eating disorders

How is DD1?

DD1 is out with friends. She doesn't know her sister has gone in yet, decided to let her enjoy herself and will let her know when I see her. She's doing ok. Some things are difficult, but others have turned out well for her, and she is working well on staying positive.

Nothing for the chest infection, it's crept up on me and I haven't had the chance. Will take some pain killers and get some shut eye.

Yes, I do know aboiy FEAST, must go back there soon! :-)

Sending my best wishes to you Peace at this difficult time.

Thank you, Flaty! Very much appreciated.

Have just been to visit a friend who also has more than her fair share of problems. It all helps!