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?

[CalmItKermit]

Hope everyone has a good day...for me, roll on 1pm.

[Snowberry86]

How did it go CalmitKermit?

[PeaceOfWildThings]

Hope you're ok CalmIt. I know it can be hard. xx

[Drywhiteplease]

Calmit hope the appointment has helped. Only just read last night's post, so sorry, you must be so worried.

[KneesOfTheBee]

My heart goes out to everybody on this thread where this cruel disease has impacted on their lives.

I suffered with anorexia / bulimia for 10 years - between the age of 15 and 25. I was never hospitalised but was seriously ill.

The only insight I can give into my own experience is that it was all about "control". I had a fairly chaotic childhood and when I learnt that I could control my food intake (when others might struggle) it made me feel that I was actually achieving something. The less I ate, the more in control I was.

I found myself not wanting to grow up. It was scary. I wanted to remain a child.

The really frightening thing for me was when I developed Bulimia. I then felt I was losing the last bit of control in my life that I had - although it was also the thing that saved me as I did put on weight.

I didn't go into hospital. I didn't have counselling. I recovered when I met my husband and I suddenly felt like my life was on track. I was so very, very lucky.


I wish you all well for the future

[CalmItKermit]

sorry for not being back earlier, today was a nightmare. Forgive me if I brain dump.

Just for background, appointment centre is hours drive from home. Arrive in good time all well and good. To cut a very long story short, our appointment lasted 3 hours. dd broke down very quickly, was overwhelmed with all the questions and attention. We decided perhaps it was good for her to talk alone so she could brain dump, then we met together. I told about her hand colour when she was cold and they seemed to go into overdrive.

They pulled in another member of "the team" and bascially told us that her hands going black is a sign her body is shutting down, as is the fact her periods have stopped....in their words "why do i need periods if I am going to die"...I kid you not, these were the words. If she has heart pain, we need to go to A & E. They talked about dd being admitted,they were alarmist to say the least. They wanted us to go to a & e for blood tests, they wanted them asap. They asked us to get urgent appointment with our gp today to check blood pressure etc (baring in mind we finished there at 4 and home is hour away), we managed it, our gp is so good.

A recurrrent theme at the centre was that dd needs to eat 3 meals and 3 snacks a day, no shit sherlock!! today she had again small yohurt and berries, one cracker with marmite and an apple....excuse the language but how the fuck is she going from this to the suggested intake in the first session.

GP weighed and measured her, talked about what happened today and reassured us that as a doctor, yes she is underweight and things are not right but not as dramatic as these people suggest. We left home at 11.30 and got home at 6.15. DD is frightened and exhausted.


DD is 5 7, age 16, bmi 16, weight 7 2, Christmas she was 9.10.

[CalmItKermit]

my gp signed me off for two weeks with stress.

We have bloods and ecg with gp tomorrow, make a follow up appointment with gp for next week, then back to centre on Friday, and another centre appointment next Thursday where I think they will check weight progress and if lacking will seek to admit.

Can we refuse to be admitted? Very conflicted at the moment, centre made me feel that I would wake up tomorrow and dd wouldn;t. It was unbelievably scary. GP was very logical medically. I don't want to go back to centre and neither does dd! I know we have to.

They gave me a book - help your teeager beat an eating disort - james lock, daniel le grange.

[CalmItKermit]

knees, thank you for posting, after today, after one very full on, intense and possibly over reactive response, dd wants to go it alone. I think i have persuaded her to go to the Friday appointment, but one day, one hour at a time.

It is so heartening that others will share their experiences, these so very personal experiences, so I thank you sincerely. It sad to hear others struggle but so very hopeful when the outcome is good. wishing you continued health and happiness.

[PeaceOfWildThings]

CalmIt I think this is what they do to galvanise families and get them on board, to get everyone on the same page. I see it as a script/box ticking process that the ED staff must do as a part of their job because, for whatever reasons, on paper, statistically it works. Personally I found it distressing, but have to get over that.

I don't think any of them likes saying what they have to say. If they seem likeable and charming saying those things then they wouldn't be the caring, great counsellors that they are. It's important to trust them and help your Dd to trust them. Unfortunately we parents are not getting supported, but they will give your DD the best support. Get her talking to them. Let them know how you both feel, see what they say. Try to focus on your DD in the sessions.

I'm glad you have some time off work.

Yep I have that book too! I'm finding it hard to concentrate on it.

Did they say that you were in charge of getting your DD to eat now? If so, you can draw up a meal plan for the week. Choose breakfasts, snacks, lunches and dinners and shop for them. Sit with your DD until she eats each meal.

[Drywhiteplease]

Oh Calmit it does sound a very tough day. Peace speaks sense. I can't offer any advice, only best wishes. Stay strong. X

[CalmItKermit]

Peace, thanks for reply I was on board way before they knew dds name..itfelt like pure shock tactics, it was detrimental. After going to our gp tonight dd does not trust them and doesn't want to go back.

Yes, they said I was in charge of getting dd to eat. I can plan shop and chose, but I cannot force dd to eat.

[PeaceOfWildThings]

I've been through exactly the same thing - twice! That's why I think it is like a tick box exercise (although I am sure they would deny it). We didn't want to go back either, I was saying exactly the same things as you after the first meeting. In fact in the meeting I cried and said that it sounded as though the were accusing me of making this happen and abusing her. I told them I didn't need cconvincing. However, DD2 needed convincing that she was ill and she still isn't. I also said I knew I couldn't force my DD to eat, that I would try but it was up to her to find it in herself to do the eating.

DD2 still doesn't trust her therapist. Because of the eating disorder, not the therapist.

DD1 does trust her therapists now, and is now open to counselling, which she needs for depression and anxiety. When she found out how DD2's first appointment had been like, she told me that it was very hard to hear me say 'bad things' about her therapists at the start and how I didn't trust them. So that was a wake up call.

They need to lay it on that thick over and again to get through to a child with an eating disorder. Some parents don't understand the urgency of the situation. They listen to their child saying they are not ill and they can manage and want to give them 'a chance'.

With us, I had to sit with DD until she ate and she couldn't go to school (or get up and do something else, or have her phone) until she ate/eats it all. So try that and see if you can use the likelihood of being admitted to help your DD to eat this week. You could use the thought of admittance, say that you don't want that to happen, but that she needs to eat to stop it from happening. That it will take weeks of eating food as medicine to fully recover.

You can't force her, but you can use gentle persuasion. It sounds as if she does trust you so keep hold of that. I found taking control from the ed at the easiest part of the day, in the evening meal, worked for us. (Lunches too, sit together and prepare her something. I let my DDs prepare their own breakfasts at least for the first week but still sat with DD2. My two have very different personalities and I couldn't do as much for DD1, she wouldn't let me.)

We agreed on which plates and bowls we would use (not huge, not so small a sensible portion wouldn't fit, I had to be firm). Then we agreed on what foods would be on the menu, but did not talk in great detail. I wrote it all out on a timetable to help remind myself. I chwcked it for a balance of food groups and nutients, fkavours and variety dad to day. Working from the timetable then gave me enough credibility for them to eat what was prepared for them. If they wanted something else I could point out that they would be having the something else the next day, or I'd add it to the timetable.

Whatever works for you. I'm sure there must be families who are much more spontaneous and creative than us, and some who plan in much more detail. You can do this. You fed your DD when she was a toddler and obviously did a good job as she's grown up and done well. You can do this too.

[PoppyShakespeare]

agree with Peace, at our first meeting at the ED unit the consultant told us that young people with anorexia fall into three (not of equal volume) groups in terms of outcome: premature death, chronic course of illness with or without some degree of recovery, recovery with or without occasional relapse

AN is an incredibly powerful force to argue with but while scare tactics are unhelpful that is the reality of it, you have to be aware that it has quite a high mortality

inpatient treatment was a terrifying prospect but in the end we didn't have a choice and it seems to have helped my daughter stay in the recovered group so far

[PeaceOfWildThings]

Thanks Poppy. I'm glad that your DD is still recovering.

Inpatient treatment is the right thing for some people. If it had been seriously offered to us then I would have actually preferred to do that personally, as I'm under a lot of pressure and hospital treatment would mean I could relax in the knowledge DD is not dependent on me to get this right, and that professionals would be there to say the right things. If at any point either of my DDs need to be admitted later in life because they have a relapse, I want them to go and get that life-saving help.

[PoppyShakespeare]

I know it's not easy to hear but until we can more reliably predict which group which child will fall into I think it's probably necessary to learn what you could be up against

[PoppyShakespeare]

I got some help and support with post meal supervision etc via social services during leave/outpatient treatment - was self employed single parent with other children and horribly overstretched - but it was a huge battle even then, before the cuts, and I think only because my sister held a senior post in social services and helped me get her registered as a child in need or at risk, something like that

there were only ten NHS beds and one day patient place in those days for suffolk, Norfolk, Cambridgeshire and parts of 3 other counties (essex, Herts and Northamptonshire) so children had to be literally at death's door, I don't know if this has improved over the past decade but I hope so

[PeaceOfWildThings]

DD had her ED appointment today and she has lost weight. Her therapist predicted this might happen if DD had indeed bwen regurgitating food the week before last, as the result on the graph is a classic peak-> trough-> level line, as the regurgitation triggers starvation mode and the body retains liquid and cholesterol etc for a week. Then when that was brought under control and the body relaxes back to normal, all that extra water weight is lost. Scary stuff. Overall the general trend is a slight rise in weight over the 6 weeks DD has been in treatment. I think she is starting to look a bit less unwell and is just a bit too thin, rather than looking as starved as she has been, but her leds still are oddly bony and what is left of the calf muscles hangs loosely and is an odd shape without the tone and definition she used to have. One day though, hoping that one day she will get back to her sports and her running.

[CalmItKermit]

DD managed to take her exam this morning then straight to gp for bloods and ecg. Nurse and GP couldn't get blood, ecg showed slower heart rate than preiously. Back to gp for second attempt then on to care team.

I have probably missed loads of questions and advvice but what is sticking out is the question am I in charge of her eating? The answer is yes. Team calculated that dd has been on approx 500 cals for a long time, I now have to encourage her to eat 3 calorific meals with dessert and 3 calorific snacks every day.

Exhausted.

[PeaceOfWildThings]

Hope you've slept well, CalmIt.

Tough times. You're doing brilliantly, both of you. Keep going. It's good that they are giving you so many appointments and keeping a check. (The doctors and nursescnunurses at surgeries can never get blood from us, so I always take the form and go to the local hospital walk in clinic for blood work.)

Good luck today for your DD's last exam.

A lot of my days are taken up by appointments and driving one or other child to them, in between meals. It is just something that a parent of a very ill child has to do. Rather than think of it as a burden, Inhave to think of itbas a way to spend more time with my child and improve our relationship. (Fine when I'm not in pain, enotionally wrought or exhausted myself).

DD lost weight this week. He therapist exolained how it was because of her purging/regurgitating food the week before last, the water and cholesterol retention (due to the body in crisis retaining reserves) and then the loss of water as the diet and behaviours went back to normal.

[CalmItKermit]

Morning Peace, sorry to hear dd lost weight, all such a damn rollercoaster.

Dry, do you have your appointment yet?

[PeaceOfWildThings]

Excuse me while I vent and add a diary entry type post. Ignore it if you want to! :-)

Did I mention we have to stop her behaviours now? I questioned this. No the therapist doesn't think DD is likely to stop, given that her thinking is so clearly controlled by anorexia. Stopping the behaviours is a way to challenge the eating disorder. So I have to gently remind DD to not add a bucket of spice to every meal. Sit with her and watch her eat. Not add tea to her cereal or dip her toast into her smoothie, etc.

I feel like thy are asking me to wreck another relationship with another of my children. But I need to get over that and concentrate on being gentle.

I feel like my life is doomed. Have been trying to sort out a family holiday and we can't even have a discussion about it. No hope for us to actually enjoy a holiday together. It feels so risky too, with DD1 just going off all the time and not wanting to be around me at all. :( I wish I had been able to somehow get calmer and not let my anxiety about all this run away with me when I was refeeding DD1, but so often she lost her temper and threw things and hit me, screaming, with just the one thing for lunch (and never a sandwich or boiled egg or half the things DD2 eats) let alone the 5 things that DD2 has to eat. There is no comparison.

DD2 said that she has never regurgitated or purged and she didn't like the counsellor saying that. She didn't understand what the graph meant or what could have caused the level/loss, then sudden rise and dip which showed the classic crisis/water retention/normalising pattern. My theory for the moment is, since DD2 is the lowest weight her therapist has ever seen (right off the bottom of the danger zone on the national percentile charts :( ) that it didn't need purging to trigger the crisis management in her body. Just not gaining weight that week (from a camping sleepover with friends, a music festival and still not having stepped up to the current full 3 meals and drinks and 2-3 snacks per day). So being so very low weight was enough for her body to see the exercise and minimal diet as being starved and retain that water weight. We agreed on that this morning. I took her spices off her (and her phone) and said she was to eat her cereal, drink and snack bar separately. I gave her granola instead of toast so that she could mix it into the porridge (we've run out of bread). That's the other thing...so many more shopping trips now, and not enough cupboard space for all the snack bars and vitamin drinks which have taken over our counters. Ugh.

I wish DH were more emotionally supportive. I don't often turn to him for words of encouragement, I wish he could offer me a bit of kindness, I really needed thatvthis week. I think he should get some counselling. I don't think he is just 'being a man'. I can't leave him over this but I can't manage to be the only provider of emotional support for myself and our children, I'm long since worn out with it.

[CalmItKermit]

Peace, I've only just seen this, gp appt and back to care team!

OMG is all I can say, do these people have any idea the pressures you are under?!?!?!?

What's the reasoning behind taking the spices away?, surely if she is eating with spices, eating her dipped toast and feeling comfortable with that then the rest can be sorted when she's on an even keel!! I do not understand this at all.

I'm sorry about your DH, I'm a lone parent so doing this by myself so know about going it alone.

How has your day been?

[PeaceOfWildThings]

They know the pressures I'm under, but I'm not the patient, I'm a quasi volunteer practitioner, employed to administer the care and 'prescribed' foods according to what works. DD2 says I do that bit fine, it's the being a mum part I'm crap at apparently.

Taking the spices away is about challenging the anorexia thinking that is driving DD to do these things. It's not just about getting her weight up, it's about her accepting she is ill, learning to manage her disordered behaviours (ones that have developed in the last few weeks...like wiping the peanut butter from her toast onto her chair) so they don't continue beyond her weight gain.

Also, if I continue to allow her to pour spice onto everything, she will most likely refuse ro eat when spices are unavailable. Also, she's needing more and more spice and hotter and hotter spices...I can see that being transferred to addictive substances later in life.

[PeaceOfWildThings]

I'm just worn out and DH does his best and supports us the best he knows how. He works abroad and so I am pretty much a single parent. We do chat a lot and keep in touch, but when I get depressed and desparately low he feels it is odd for me to be asking him to say nice things about me. He just refuses. Says it feels strange. We need to sort it out.

My Dr told me this week I should be on Prozac and she wants me to try it out. I'm struggling with that.

Another difficult day. DD2's ed counsellor is trying to get her into outpatient therapy to eat at the unit every day of the summer holidays. So I'll be taking her. So no family holiday or going to stay with DH.

[CalmItKermit]

Jeez Peace, is it really your "job" to challenge the anorexia or is that the job of the therapist? As always I don't understand this horrible horrible thing, but surely your "job" is to try and get food, any food inside your child, with spices or not.

I am so glad you started this thread Peace, I have no OH so don't really know if your dh is doing "a manthing", but on here we are mums, we have that nurturing/survival instinct, we need to care for our children, and we will,even in these dark times and I hope in some small way we can look after each other because by god, just having someone type a few words on a screen last week telling me that they have been there/are there has given me a small glimmer of home.

And you know what, WHEN MY DD IS WELL, because SHE WILL BE WELL, anything and everything I have learned I will pass on.