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?

[PoppyShakespeare]

good luck for today calmit

peace did you decide to start the fluoxetine, have you been on it before?

[PeaceOfWildThings]

Ah...I see what you mean CalmIt.Hope it goes as well as it can.

Prom is just another one of those things that throws up so many difficulties for them whether they go or not. From what they wear to who they are with, it's hard. DD1 wore a dress with a lace up back and I adjusted it to floor length for her (a week before...it was all last minute).

I m supposed to phone the dr in a couple of weeks about the flouxetine, Poppy. I havent been on it before, no. I'm undecided tbh. I think what I need to try to do is start to get out and meet people more! It won't bring any normality though, so am pacing myself.

[Drywhiteplease]

calmit hope things go well. Let us know. Dreading Dr app on thurs, bet still no weight gain.

[CalmItKermit]

Devastated..dd is "dangerously underweight". Despite hammering away at those damn cals, she gained 6g in a week. Hospital/camhs want progress or she is in, I think it's the best thing for her. Camhs on Thursday, dietician next Tuesday. Camhs can get her in hospital if things not going well. She should be on bed rest til Thursday but she's not having it, won't "put her life on hold".

Prom wont happen and doctor said college in September is doubtful at the moment.

I am about to open wine.

[PeaceOfWildThings]

CalmIt, sorry It's been bad news. This disease is horrible.

Weigh in for us today too. DD has lost weight again. The only reason she's allowed in school is because of school exams and a GCSE this week. She's no longer going on the activity weekend that she had been booked on (a relief quite honestly) and I have to give her more calories or she will get pulled out of school.
Extra slices of toast and peanut butter, I'll be making cake and there will be more sweet snacks and puddings.

[CalmItKermit]

oh Peace that's awful, glass of wine for you as well.

Totted up how much she's had today, 1259 cals. They want 2500, she has previously lived long term on 500...I don't know where I can get these beefy bastard calories from.

[PeaceOfWildThings]

I asked for some help on how to boost the calories and we were given a sheet with snack ideas...

[PoppyShakespeare]

lots of love calmit, I spoke to my daughter about this thread and her one piece of advice was that hospital really helped. She was on bed rest in a general hospital until she was well enough to be transferred and it was utterly terrifying but her time as an inpatient in the ED unit brought lasting change. She is enjoying life now, over halfway through the academic stage of qualifying in the UK as a lawyer, looking at law schools in California. She spent her 18th birthday in a coma on life support, unable to maintain her own airway and I was living in a flat at the hospital just down the corridor because she wasn't expected to make it. I don't think I will ever get over that. But here she is, almost 23 and full of plans, healthy and very much alive.

Lean on your friends or family as much as you possibly can, lots of parents have been where you are now and can imagine all too well what you might be feeling and you're not alone xxx

[PeaceOfWildThings]

A bit more...

[PoppyShakespeare]

Calories in drinks can help, I've still got all our meal plans somewhere - lots of milk and juice with white bread and butter (actually it was flora, yuck) and malt loaf with butter at every meal and snack. Malt loaf is great! It's so dense in calories.

It was all very transparent and once she started coming home I would weigh everything with her, no sneaking anything extra in, and although we worked on portions rather than overt calories some of the plans were over 3000 calories a day.

[CalmItKermit]

Poppy, thank you for your posts. Dear lord you have been through the mill and back, glad your dd is well.

I don't think dd would thank me now but I really think hospital is the way forward.

Our target food plan was shot down last week, we were told no yoghurt, muesli or soup, veg, fruit.

Will be looking at malt loaf and jacobs crackers tomorrow. iI am struggling to think straight at the moment, so tired, worried and scared.

I wake up in the morning and wonder if dd will.

[Drywhiteplease]

Oh Calmit I'm so sorry. It's all so scary. Perhaps hospital would be the best place for her. I'm no expert though. You have been so kind to me. I'm here to support. My heart goes out to you.

Poppy I can't imagine how traumatic it must have n
Been for all of you. So wonderful and heartening that your daughter is recovering and happy.

[CalmItKermit]

TIP - for those going to paediatric appointments, they will not weigh you in jeans but will in leggings and vest top.

DD mortified to be weighed in her knickers, we had no idea, weighed at gps and camhs in clothes.

[CalmItKermit]

Dry I am completely comfortable with her going in, as wrong as that may sound.

Not in a grudging or selfish way but since last week the onus has been on me to get food into my dd who has rapidly lost 2 1/2 stone. Although I have seen gps/nurse/camhs twice and paed doc today no one has actually told/advised me how to do it apart from encourage her.

Me, I'd love to play the violin but if dd said to me come on mum you can do it, could I, really?????

[PoppyShakespeare]

am trying to find the 'messages of hope' book online, I read it a lot, it was made up of entries from other parents of children on the ward over time and it was such a big comfort and help but it only seems to have one entry now unless my phone doesn't show the whole thing

should be here somewhere

[PoppyShakespeare]

it's just such a massive, destructive and irresistible force to contend with alone

but people do come through it all the time and the treatment and specialist support you and your daughter have now makes that so much more likely

[PeaceOfWildThings]

It is hard but am trying to not focus on the hurdles and to take the long view and think of the bigger picture.

Mini WildThing has had a good breakfast (porridge, 2 slices toast with peanut butter between, breakfast bar and midium sized glass of juice) and lunch (beef and salad sandwich, 20+ prawns-on-sticks with pepper sauce, yogurt, 50g dark chocolate, bag of crisps, medium juice.)

I feel worn out. I'm not sleeping and have bouts of desparation, but am coming through them. Onwards.

[CalmItKermit]

Hi Peace, this is just so hard isn't it? Looks like mini has done well so far today, what's that calorie wise?

[Drywhiteplease]

Another chat with dd last night when she revealed more. Apparently she started after loosing a few pounds on holiday last summer. She has been weighing herself in my bathroom for months. She feels "stuck" because she doesn't want to loose more weight but she doesn't want to put it on either, although she knows she has to.
She agrees with me when I suggest increAsing her food but when it comes down to is reluctant.
She had peanut butter in her toast this morning with her granola, but such a thin spread .
For lunch at school she continues to take her wrap, I have told her to put in more ham. A friend commented on how disgusting spinach is an how could she eat it? She's now embarrassed to take her wrap. Agreed if this happened again she's tell her friend that she has to eat so please don't make comments.
It's a constant struggle.
Only been 3 weeks since we first went to the GP. I have to keep reminding myself that, that it will be slow and that at least she's not loosing any more weight. I'm not sure that she's having enough to put on weight though.
So tough.
Will see what GP says tomorrow.

[Drywhiteplease]

peace your dd is doing well. Hang in there.

[Snowberry86]

I'm glad miniwildthing had a good day.

Reading your post has made me think about how little I am eating at the minute and made me realise I need to have more. My initial reaction to your post was that she was eating loads and that how on earth could she be underweight with that much food. I understand she needs the food to put the weight on but my head doesn't let me comprehend it.

Today I have eaten a banana, a wispa bar and 8 pieces of penne pasta. No-where near enough food for a 5ft7 adult and I'm annoyed with myself. Will try again tomorrow- it's tough fighting this as an adult as there isn't the parent there providing the food and insisting I eat.

[PoppyShakespeare]

snowberry, I've had a banana and a chunky kitkat! which wouldn't be so bad if I hadn't trained with weights at the gym, been for a 4 mile run, walked 9 miles, sorted out my horses etc

some days are better than others - I do v well on 3 meals 3 snacks but something always happens, the overall calorie intake drops to about 800, the range of things I can eat dwindles to just a very few items, or I purge or I over exercise or just cycle through each phase

[PoppyShakespeare]

(Was seeing an ED therapist privately until fairly recently and know it would be good to check in with her, but I also have a CPN and psychiatrist who are free to me and we use Recovery Record - do you see anyone or get support from anywhere?)

[PeaceOfWildThings]

I'm lucky to have a car and can drive over to the school so that DD can eat her lunch in the car with me. She wouldn't be able to eat with her friends either. Also I've been able to pare down mu pt work so it can fit between meals.

I don't know how many calories she eats. DD1 would know exactly! (Unfortunately.) When DD1 asked about that around this stage, she was calorie counting and was obsessive about not going over 2500 calories. So this time we're not mentioning the numbers and I'm just going by the 'lunch is a sandwich/soup/kedgeree plus 3 things, the drink and afternoon snack'. Now I've got the printoffs above I can see that things have not been calorie dense enough. Matching the things on the snack list should do it.

[Snowberry86]

I'm not seeing anyone at the minute- I don't feel that there is anything anyone can do to support. Ultimately as an adult I have to force myself through.

I've put on 5lb recently and my bmi has gone from 16 to 17.5.