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?

I admire all of you fighting so very hard for your children's health and future. It is hard sometimes to seperate the anorexia and the child, but the child you love IS still in there ... just hidden by this horrible condition. It saddens me terribly that professional help is still very hard to source, as early intervention is critical to full recovery, which IS possible with timely, specialist treatment. I speak from experience, having been hospitalised (for three years) at a specialist unit over 50 miles away from my home in my teenage years (20 years ago), as my anorexia had became life-threatening and entrenched, therefore necestating a long treatment period. I am forever thankful that I was admitted and benefitted from specialist help however, as I know I would have not have survived otherwise. I will forever regret the years I was separated from my family, and the gap created between my siblings and myself took years to repair, and they grew into unknown adults in my absence. The traversty of lack of specialist ED services for adults (once past 18th birthday) is horrific, as my area only developed a service in 2011, meaning I had to cope without any specialist help for over 15 years after my teenage admission, and managing my anorexia therefore has become a daily struggle. I now (thankfully) get the help I need to stay (hopefully) functioning in life, but feel that anorexia will always overshadow my life. I have not been able to fulfil many dreams, but I try each day to 'seek the joy' in life. I wish all of you the strength to continue to battle on behalf of your children ... one day, when this is past and they are living happy, free adult lives, they will be so thankful that you fought for them ...

Minimoan, thank you for sharing, I hope you continue to be "well".

Dry, it's so disheartening about different scale readings!! At our appointment with hospital, the dr said to just stick with them and camhs and leave out gp at this stage as it can confuse and they are the specialists.

Not a good day today at hospital. Small weight gain but nurses couldn't get blood. Dietitian told dd she had to be a certain weight for her height, dd argued and argued she could never be that weight. On the way to the car she told me she would rather kill herself than be that weight. Said she has nightmares about being that weight again, that is 9st 10 at 5" 7

dd had been hoping to attend a week long activity at the end of July, dietitian said it would be fool hardy, dd devastated, has no summer to look forward to in her eyes.

Calm IT that sounds frustrating! Take what the dietician said with a pinch of salt. The dietician didn't say your DD needed to be at that weight to go to the summer event, just that it is the average weight for height for your DD's age, perhaps. If your DD's put on 2 pounds a week from now until the event, would that put her at a safe weight to somehow take part? (Or is it just too energetic and a week too long to risk?)

Would you be seeing the dietician every week? It's unusual for ed counsellors here to give a specific weight to aim for like that. Usually, here it would be a range, I think, and there would be a number of factors which would suggest the patient has got to their healthy weight (set point) for them (periods returned, rehydrated, pulse and so on back to normal, blood tests normal etc.)

Hugs to you and a big !

Hi Minimal! Welcome to the gang.

Thank you for telling your story so far. It's great to hear from you, it all helps.

I'm sorry to hear you haven't fulfilled your dreams... Hope you can make some new dreams.

Minimoan it's such a help to hear from adult survivors of AN and to know that the disease can be beaten. I don't think help for adult sufferers is that great now so I can't imagine how bad it must have been 15 years ago. Echoing Peace's wish that you find new dreams!
Calmit I guess it's good news that there are still things your DD wants to do. I wish there was a way of tackling all this which didn't involve focusing on their weight so much. I know that makes no sense at all but it seems so cruel that the one thing which will help them is the one thing that scares them the most.

Oh Calmit I'm so sorry,that's so hard.

Minimal your kind post made me cry.

I really don't know how you all manage, this is so hard, I guess we have no choice. Why do our beautiful girls hate themselves so much?

Dry, I meant to say, I'm so glad you saw a helpful MH nurse with your DD. It's sounding positive. Agree that it is very hard to remain influenced by the disordered thinking and to keep a realistic perspective on their weight and how much they need to eat. I think I've been trying to push DD too hard and that is why I'm getting so much rebellion from her.

dd not out of the danger zone until she has bmi of 19, currently 16.4, she is not strong enough or motivated enough to eat way way over her current target of 3000 cals.

Shes had total meltdown tonight, doesn;t want to see camhs or hospital, she can do it alone.

sorry to put into context, dd was not well enough to sit her last gcse exam...the event she wants to go to entails rock climbing, kayaking that sort of thing, and is residential so cannot "keep an eye on her".

Oh Calmit that's a shame for her, but may make her realise what the future could hold....

Peace I think it's natural as a mother to want to feed your child and to want them well quickly, I find it hard not to nag her, God knows how you cope.

CalmIt that does sound really hard. Over 3000 calories... What does that even mean? I don't think we've got to aim for that much (DD is much shorter). The more I try to increase the calories, the more she doesn't like it and finds ways not to eat it.

we had 3000, 3500 calorie plans for ages, even after inpatient treatment (my daughter is 1m 55cm) - a lot, like a litre jug, of fruit juice or nesquik with bread and butter at every meal and snack - food is medicine!

don't they give you meal plans? I've had input recently for myself and it included similar meal plans, again based on portions

Thanks for the replies, yesterday was bad .

They don't give meal plans, just calorie count....camhs suggest food, sticky toffee pudding and custard, cream cakes, fish and chips, dd will not anything like that.

Dreading that the heat will affect her appetite even more .

I get a long way with bargaining and a choice between two things.

DD wouldn't eat those things either, Calm. I wonder if the Maulden site has meal plans? I'll just look....

^Maudsley not Maulden

Hi Peace, they do have a refeeding plan, crab casserole, cans of creamed corn .

From the Maudsley parents website, FAQ:



What is the Maudsley meal plan? Can I get a copy so I know what to feed my daughter?

Renee Hoste, PhD responds:

"There is no specific Maudsley meal plan â?? the only meal plan is the one you come up with. Parents are not given a diet plan outlining a certain number of proteins or fats that their child must eat. We encourage parents to rely on the knowledge they already have about food and nutrition when deciding what to feed their starving child. Most parents know how to feed their kids, and until the eating disorder came along, you had a healthy and well-fed child. You may have other healthy and well-fed children at home. Use the knowledge you have as a parent to decide what your child needs to eat in order to gain weight. A Maudsley therapist can guide you in these decisions and offer suggestions, but the therapist will not dictate what your child should be eating. The therapist leaves that up to the parents, as you are the experts on your own family. Just remember that kids in recovery can need a surprising amount of food to reverse malnutrition. Although each family is different, many parents find that energy dense foods such as milkshakes are very helpful (as opposed to trying to achieve weight gain through sheer volume of food). "

Oh yes... They have recipe suggestions. Lots of American ingredients. :/

CalmIt, can you write out a meal plan yourself... Make a template...

Peace, yes I've made menu plans based on 3000 cals and what she should be eating but she just won't eat high calorie food and can't cope with lot and lots of lower cal food to make up. Catch 22 at the moment

Maybe start with what she will eat and up the amount a tiny bit. I no longer buy celery or cucumber. Avocado and oranges/peaches are their replacement.

I think it needs to be done partly with your DD. Bargaining between different options to fill in the bare bones of it. It sounds as if, for your DD, anything under 2000 kcals per day is going to mean her body is 'borrowing' energy and nutrients from elsewhere I order to just survive, and that can't keep going. (That varies person to person, based on things like height and body frame and hereditary body shape etc). 2000 calories is listed as the average for a healthy woman to function. Anyone who is underweight needs more than a functioning amount, they need to restore the damage, enough to allow the body to heal and the systems to regain normal functioning. That's what we have to get through to them at every meal. That's why we are having to give them more than they want. I'm finding that I get through to DD one meal one day, but she forgets it and the next meal it all has to be said again and it might not work then. It's not so much about the food, it's about them trusting what we say and what the professionals say. It's about persuasion and patience to repeat things.

Peace, you are spot on with that. Anything lower than 3000 will see no improvement. She is starting to doubt/dislike the professionals and wants to do this alone. 10.30am and I'm shattered.

Calmit my DD's warped way of thinking about food means that in her head dried fruit and nuts are "healthy" and ok. They are filled with sugar especially dried banana chips which she is eating a lot. Would your DD try these? Sticky toffee pudding? Cream cakes? It's carzybto expect someone who is scared of food to even contemplate these? I can't believe they don't suggest less "obvious" calorific foods .

I'm finding milkshakes and ice cream are our new best friends. You can get a lot of calories in a milk shake of you use whole milk and some hefty dollops of ice cream and they are the one high calorie food she DD will allow herself in this heat. Even so, we barely scraped 950 cals yesterday.

Would she have whipped cream on the top?