Parents of children with very low weight/anorexia, support

(363 Posts)
PeaceOfWildThings Fri 22-May-15 09:56:57

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?

PeaceOfWildThings Fri 22-May-15 09:58:17

I hope I'm not the only one! Everyone who ia informed on eating disorders is welcome to participate. :-)

PoppyShakespeare Fri 22-May-15 12:55:31

you're not alone although happily my daughter has maintained a higher weight for a few years now and is doing well at university

when she was an inpatient (Phoenix centre in Cambridge) the parents all met regularly and it was so helpful and supportive, could you ask your child's treatment team if something like that exists in your area and if not ask them to help get one up and running?

not instead of online stuff but as a local real life addition

PeaceOfWildThings Fri 22-May-15 14:07:30

There was a carers/parents support group, held on a night I worked when it ran. When I did manage to rearrange my work, it stopped running. My children haven't been inpatients so I don't have access to any support there.

PoppyShakespeare Fri 22-May-15 14:37:48

that is a shame about the group, hopefully more people will come on your thread here at least

it might be worth a go at setting something up somewhere near you, it doesn't take an awful lot and b-eat might advise and fund (?) or you could try your local Mind or whoever or even GP surgery for a room

don't think I could have got through those days without contact with others who'd been there, even otherwise intelligent and kind people would sometimes say the most ridiculous things

PeaceOfWildThings Fri 22-May-15 16:56:11

That isn't a bad idea, although I'm not surecI could take susomerhing likevthat on just now. Maybe in a few months though.

CalmItKermit Fri 22-May-15 18:22:23

hello, thank goodness I found this thread.

Just back from the gp, dd has an eating disorder, she will be referred. I am trying to hold it together, I feel numb.

PeaceOfWildThings Fri 22-May-15 18:51:55

Calm, thank goodness indeed! Welcome!

I've been there twice so far....youngest DD was diagnised with anorexia just 2 weeks ago and I still get that numbness or occasional panic moments from time to time.

CalmItKermit Fri 22-May-15 19:04:29

Peace, thank you for just being there.

I don't even know what to reply to your being there twice so far, how on earth are you coping, if in the nicest possible sense, you are?...I am a fcking wreck, dd is "not of this world" at the moment.

DDs eating disorder is surely anorexia, she is a twig and I should have seen this coming/happening, put it down to exam stress, I was wrong BIG TIME!

PeaceOfWildThings Fri 22-May-15 21:09:01

Oh, all the usual! Music, photos, crafts, daily workouts (I don't talk about this with DCs...I was obese a few years ago and gwtting to be healthy and fit has been a way to feel I'm helping.)

Although the initial shock was devestating and ut really felt like my heart was breaking again, I've xoped much better this time around through following some helpful Psych blogs on Tumblr, and joining 7 Cups of Tea to do some private venting and get help putting the old CBT into practice. (It also helps to support others...and be amongst others who are not all 'perfect' families.)

Being well informed helps. Firstly, this is not our children's fault. They have not brought it upon themselves. There is scientific proof that this illness cannot be chosen or made and that parents don't cause it either. Do not blame them or yourself, if you feel you are starting to, nip it in the bud.
(Although there's likely to be a genetic link).

There's a book called Skills-based Learning for Caring for a Loved One with an Eating Disorder by Janet Treasure et al.

There's another one I don't have yet that the ED unit has recommended, by someone called Locke.

CalmItKermit Sat 23-May-15 03:59:48

Peace, thanks again for the reply. Don't really know what to say, I am shocked, devastated, scared in equal measures.

PeaceOfWildThings Sat 23-May-15 09:04:46

What someone on here said to me was 'don't catastrophise'. That helps. Unpack what you are unhappy about and sort through the things you are imagining might happen from the things that are real.

My older DD has been saying lately that I am an unfit mother and that she WILL move out asap because she cannot stand living with me anymore. This has been going on for a long time on and off, without her saying anything or explaining she's made it clear she hates my company. She has just said it has changed, she's realised that it isn't about me it is her own anxiety, and she doesn't want to move out anymore.

There is a grieving process I think. There's going to be at least a few months, maybe a year, maybe much more, of recovery. This could even be with them for the rest of their lives. It might not be, and we have to stay positive. Providing a calm and loving and respectful home environment is the most important aide to recovery and the single most important job we have. Dealing with our own anxieties away from them is paramount It is rather like when a child was diagnosed with leukemia years ago, one of the hardest parts for us as parents is finding anyone who understands how serious it is, and the huge effect it has on family life.

giraffesCantPluckTheirEyebrows Sat 23-May-15 09:06:29

Adding place to reply when on laptop

PoppyShakespeare Sat 23-May-15 09:22:58

Yes there was a grieving process for me too, but if it is any help the outcomes from my daughter's time in treatment (IP and out) have so far been much much better than we were led to expect. Most of the children, I think two thirds or more, have maintained a healthy weight into their early twenties. One or two have had relapses less serious than at first and got back on track without much disruption. I was given some horribly frightening statistics by the consultant at our first meeting but the children have done much better than that so far.

Feel for anyone going through this, it also seems to strike the nicest children (not that you'd wish it on anyone but it's such a cruel condition).

PeaceOfWildThings Sat 23-May-15 11:28:49

How are things today, Calm?

Another thing I noticed in tge days before the ED unit first meeting was, my DDs would not take anything from me, apart from evening meals. They both were making their own food, and even if it was just a tomato and a lettuce leaf, they would not eat another thing I gave them. At the ED unit here, they work on the Maudsley approach where a parent is available, and from day one I had to come up with a meal plan and prepare meals and snacks for the right number of calories per day. The first couple of weeks go alright and then around about now, at the 2 week point, there is a bit of a dip in their weight as I stop pushing my luck because the anorexia starts throwing hissy fits. I hate this stage, it feels like lose-lose! It does pass, but it is one of the worst parts. Really it is win-win because it ultimately brings me together with my child and we spend time together. I can tell and show them I love them...it really strengthens the relationships.

CalmItKermit Sat 23-May-15 12:04:20

It is so good hearing other peoples experiences of this, thank you.

I believe this has all been triggered by stress from school. DD is under massive pressure from a very unhelpful, unsupportive school. She is in the middle of her exams, just the thought of the school is enough to send her reeling. I'm wondering if I can get her signed off school and just go in for the exams, she has no study leave.

PeaceOfWildThings Sat 23-May-15 16:50:05

Hold your horses!

Firstly, there is scientific evidence anorexia is not caused by schools. I'll come back to that.

Although they don't know for sure what causes anorexia, there is a clear pattern of combined factors which contribute to it: 1: genetic link...If you think through all of your and your DD's father's extended families, is there or has there been anyone who has had/got any type of eating disordered behaviours?

2: research by experts (Dick Swaab and others) has priproved that this is a disorder of the cecentral cortex and the hyperthalmus of the brain. Swaab puts forward the credible theory that children with anorexia were starved of oxygen briefly at birth, which had no detectable affect at the time but upset the chemical and hormonal balance in the brain and this sets off a chain reaction when hormonal changes occur in puberty. His studies show that for a large % of children, this could have been a factor. (Brain scans have proved he is right about the hyperthalmus.

So, what happens when these hormonal and chemical imbalances are triggered? It affects the parts of the brain which control body image, the need to drive oneself to perfectioniam and the desire for starvation/loss of appetite. There also seems to be a lack of boundaries concerning care for others (they put others before themselves to the point of putting themselves at risk).

So going back to school; what you are seeing is the illness in control, driving your DD to perfection and high grades. This is not the school's fault or hers.

Before you think of taking her out of achool, listen to what her care team have to say.

For us, the treatment involves family based therapy as I've outlined above. If my DD does not eat her breakfast, she cannot go to school that day. That is the only reason she eats it. If she does not eat up all her lunch, she cannot go back into school. Again, that is the only thing getting her to eat. Playing off one part of the illness against the other is best way to combat it.

I have suggested that DD drops one of her subjects (she's heading for A/A* in thwm all) but she refuses. We're going to wait it out and see if next year she might like to.

Snowberry86 Sat 23-May-15 17:01:41

I hope you all manage to find some support from each other.

I am an adult with an ED (had it as a late teen, recovered but been having a relapse for past 6 months).

PeaceOfWildThings Sat 23-May-15 17:20:04

Snowberry, thanks for posting. smile
I hope you can find support on Mumsnet too, there are a lot of posters around who have or who have had EDs.

Also, we parents and carers could do with seeing what you have to say, when you're ready, although don't feel you have to do that. Hopefully this thread will be a good place for you too.

CalmItKermit Sat 23-May-15 18:36:34

Peace, I bow to your greater knowledge, and I mean that sincerely, so very new to this. I am very grateful that you have taken time to respond with such an in depth post, there is a lot to think about and look into.

No history of eating disorders on my side of family or as far as I can remember her father's (lone parent now for 10 years). Birth wise, everything seemed ok, second child 4 hour labour, no intervention or problems.

The control thing..dd says that she feels "out of control" with school and the whole exam situation. She is a high achiever but needs b and c to get to her next step. School are pushing and pushing for A/A star, hence my assumption that it is school. Her english teacher told her that if she gets A* he will be on for a pay rise, not helpful.

DD doesn't have a care team, she was diagnosed yesterday, being referred. 1st June she starts first of 18 exams, she has said that she would be so much happier if she could revise at home and just go in for exams.

She is literally eating nothing, by nothing I mean she last ate on Wednesday, a few bits from a small apple.

I collect eldest dd from uni tomorrow, I have to skype her later and tell her what is happening, she has just finished her exams so have held back from telling her.

Thank you so much for taking time to read and reply, tried to call beats earlier, they are closed for the weekend. I am a mess.

CalmItKermit Sat 23-May-15 18:42:25

Snow, echo what Peace has said I am sure you will find support here. I am not a regular poster but as you can see I asked for help and some wonderful people have been prepared to share their experiences and knowledge. Keep posting.

Snowberry86 Sat 23-May-15 19:16:44

Calmitkermit- what is happening at meal times? Is she point blank refusing food? What excuses is she making for not eating?

I assume she is still taking in liquids? Can you get some meal replacement shakes in her?

I'm on the up and have put on a much needed 5lb in 2 weeks. The first few days were hardest as my stomach wasnt used to proper food again and I'm not going through the psychological impact of the weight gain.

CalmItKermit Sat 23-May-15 19:31:19

hello snow. I have offered to cook, asked if she wants anything from the shops but for quite some time now she has been preparing her own meals but over time the quantity has dwindled. Noticable change in eating pattern was when she would have a can of soup for dinner, a packet of noodles, she then moved on to just eating fruit, although lots of fruit, that stopped. She has said that she is stressed about school/exams and that she physically cannot eat. She drinks lots of tea.

I spoke about complan last week, she said that's for old people but perhaps that is the way to go. As my previous post stated, she doesn't have a care team yet.

Any gain is a good gain, and it is encouraging that you are accepting the gain.

(please forgive any crass comments/terminology, I am just so very new to this and all very raw).

PeaceOfWildThings Sat 23-May-15 19:58:38

Thanks for the clarification, calm.
In that case, do taIk to the school and with the GP's diagnosis they will let you have her home I should think.
If they are external exams, get GP or ed counsellor to write up a letter for school to send to the examining board. This can get her rest breaks in the exams and will be taken into account for grading too.
Phone ed unit early on Tuesday and ask for her referral to be made urgent due to upcoming exams and school pressure on her MH (resulting in her being taken out id school) they will listen to that and hopefully will understand the importance of you seeing them more urgently.

You are her mum.and you are the expert of her, not me. xx hugs

Snowberry86 Sat 23-May-15 20:01:18

I use this as a meal replacement shake www.arbonne.com/PWS/homeoffice/store/AMUK/product/Protein-Shake-Mix-Meal-Replacement-Chocolate-2069,2232,486.aspx
It is fairly expensive- I only use it as I have a friend who works for them so supplies me cheaply. Complan is the same sort of thing but has less vitamins and more sugar I believe.

I assume your daughter is 15/16 given that she is doing her exams? Have you considered not allowing her to prepare her own food and insisting on a family meal at tea time? No pressure to eat anything but food is placed infront of her every night as a routine?

Everyone is different but for me I cannot prepare my own food. I just don't bother having anything as I would rather not eat. I need my food prepared and put in front of me and then I eat if I can.

Is she able to suck on things like polo mints? Or eat sweets? Tiny things to help keep her stomach accepting bits of food?

Is she talking openly about her feelings? What are her main fears through the anorexia? For me it isn't all about weight. I control food when I can't control other areas of my life but I don't always do it to lose weight. I do it to punish myself and because I like to feel the achievement of weight loss and of starving myself.

Anorexia is so different in each person so I might be saying the complete opposite of how your daughter is feeling. She will find it very difficult to express herself and talk about it so have lots of lines of communication open. Talking helps but if she prefers to email or text you about it instead then encourage it.

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