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?

aww Peace, hope you get a good nights sleep. Me, today, I'm angry! but that's the nature of the beast as I am sure you know.

Today is all but done, sleep, re-group ready to fight tomorrows battle x

Well its been a hard day but DD has coped really well. We were at the CAMHS clinic for 2hrs. She has lost nearly 2kg since last week. Spoke to the team dietician who was really down to earth and then we were introduced to the 'family based' therapist/ counsellor. Fortunately DD took to her straight away which will be a huge help I think as we embark down this path.
My biggest worry about sitting DD down to a plate of food is that it will distress her so much, she will self harm by cutting some how. I have removed razors but on Tues she took a blade from a pencil sharpener.
I feel on the back foot and totally playing catch-up.
DD had to have bloods taken yesterday which was a bit traumatic for both her and the nurse! She now has to have bloods checked 2x weekly so that's going to be fun- NOT!
My head is buzzing with trying to keep on top of all the appts we have and looking after my other 2xDC. Fortunately we are all off for the summer holidays here but this wasn't the Staycation we had planned.
HeyHo- she ate 4 chips and 2 chicken bites for dinner!!

Hope everyone else has had an OK day

Lake, hope that today is a better day. DD used to use pencil sharpener blades too, and nail clippers I think. The Ed people were not interested in helping her much with the self hard, as it was a coping mechanism and so deemed as 'helpful' and not related to suicide. I was not to tell her to stop doing it or discourage her from it. :( She was/is quite forthright about it being her body and her choice, and so it seemed to be about control to some extent. She has been mixing with friends and older cousins who have left home and has been wanting to do the same, and not have family structure/boundaries around her. She's had age appropriate boundaries, as few as possible, allowing her to live her own lifestyle and make her own choices. For her, the self harm has not been tied up with eating, it was more to do with an outward explanation for others, a sign to others of her MH. (No less worrying for a parent!)

Bloods.. Some tips- we go to the local hospital Bloods unit to get blood tests as they can always get blood, even when the nurse at the surgery has not been able to.

Drink water in advance (not too much though... A pint over an hour or two should be plenty).

Use a hot water bottle on the arms a half hour before.

Use numbing gel beforehand, wrapped in some cling film.

Treat it like something routine, not a big deal, but also as a way to give her attention and enjoy time with her. I used to get a drink in the coffee shop afterwards with DD. (It was one of the few times she could get a dairy free drink.) She would get light headed and her heart rate slowed right down, so I wanted her to sit, rehydrate, and recover in the hospital!

Thanks Peace for the advice re getting the bloods taken!
Unfortunately DD has expressed suicidal thoughts so I was told to lock up all medicines, remove blades and anything she could use as a ligature. That was very scary to hear.
There was a lack of communication today between GP/Practice Nurse and CAMHS Dr which has meant 2 trips to GP surgery, 1 trip to CAMHS clinic and 2 trips to Pharmacy.
My DM is coming up tomorrow for a few days for moral support. I feel bad that my youngest DD(10) is having no fun at all this summer holidays so at least I'll be able to do something with her for a few days

I'm glad you've been told to remove blades, ligatures etc. With DD it was cliffs, balconies and busy roads which triggered black thoughts and changed family holidays to nightmares. I'm glad to not be going away this summer, with things as they are.

Yes, have had those days of multiple trips here and there too. All the waiting, and the driving around, can be so time consuming. I'm trying to learn German between times to claw back a bit of a chance of doing something in my own right!

Lakeland, I can feel your despondency in your posts . I am "lucky" in that dd doesn't self harm, cannot imagine how to deal with that.

We had endless trips in the beginning. Our hospital and camhs team are an hours drive away, so hospital usually ends up as a four hour trip as they are always running late....it is time consuming, draining and to be honest, expensive.

The hotwater bottle trick works, dd was told to do that by our gp nurse.
Also agree that it's hard for any other family member as every waking moment is concentrated on dd.

Peace, how you doing? If your dd was "better", could she realistically leave home, ie would she have somewhere to go?

Stupid question alert!!
How do you keep a meal warm and appetising when it takes 2hrs of intense persuation for them to eat it?

Lakeland, that is a long, long meal time. Hospital have told me that if they are inpatients there is a time limit to meals to avoid just this situation.

My only suggestion would be one of those tray like things with tea lights, the sort you tend to get in indian restaurants. That would keep it warm, appetising, not so much which is why hospital has a time limit.

this sort of thing, google food warmer

www.ocado.com/webshop/product/Master-Class-Professional-Double-Light-Food-Warmer/219588011?ULP_CAMPAIGN_ID=3&gclid=CPvK-OOk1sYCFdGWtAodNpsPSQ

You can get electric food warmers too.

DD1 always wanted her food piping hot and would insist on putting her food in the microwave to heat it just before she ate. (I think it was a controlling behaviour too, not good for them to be doing it at this stage.)

You could try insulated bowls or thermos flasks.

Great advice there Peace.

How's everyone doing?

Dry, where are you? you've not been around for a while.

I'm here Calmit. Doing ok. CAHMS again tomorrow. Hope DD has put on a bit.
took Dd shopping for a few bits yesterday. Could have cried she looked too thin in black Skinnies. Awful. Think she realised too.

Ups and downs here!

Ups: DD1 has had a period. Now, this happened about a year ago, but her behaviours were very much still showing struggles with control and weight gain, and now she is making noises and showing signs that she's a little more resilient and better recovered now. Still not there yet, she has decided she's fully vegan now which obviously has its own difficulties, but we're on the right road and facing the right direction.

DD2 has, I think, possibly reduced the amount of concealment. However not completely, and she's still complaining about anything which seems even slightly more/bigger or calorie dense than usual, and still pushing to swap for 'diet' food and smaller portions. She just flat refuses to eat sometimes and says nothing, turns to the wall. She's experiencing an uncomfortable fullness at every meal, and acid reflux, but is trying to use these to stop eating, or eat less/nothing at the next meal.
So, this week she's missed some school due to not eating her meals up (or not on time) and I've sometimes taken her phone off her for poor attitude/behaviour. She wants to go to a couple of end of year socials this week, and I've said I want to see a total change of attitude in both how willing she is to help me, and how she treats her counselling sessions and attitude to getting better. If she's still as stony faced and glowering/sulky with the therapist (MH nurse) today as she has been every session so far, she won't get to go to the socials. I've given her phone back this morning, so she has everything to lose...

Update on the Fluoxetine... I've found it makes me very sleepy, and yet somehow also restless if I don't exercise (so I'm doing a short workout or run or swim or yoga each day). Also get very hot, especially at night. I've started taking it before bed and that helps to deal with the sleepiness and am sleeping better now. Occasionally I get a weird breathlessness and have to take big breaths. However, my mood is pretty steady and I'm not feeling overloaded emotionally. Also no PMT, or period pain so far. :-)
(DD1 had all these symptoms too, so I'm pretty sure the negative ones are because of the Fluoxetine.)

Dry, I know all about skinny jeans, dds are baggy! I refuse to buy clothes in a smaller size tbh.

Peace, oh how I would love dd to have a period. Dd is vegetarian, typical anorexia trait, so food already limited but vegan, I wouldn't know where to start.

Interesting you talking about your dd2s attitude, dd has become very feisty, sarcastic and pretty nasty, I ask how she is, her retort is I'm dying . Have been offered intensive four day group counselling with camhs over the summer, she said what, sit around with people telling me I'm going to die.

Hospital today.

Hope everyone has a reasonable day.

CAHMs didn't go so well today. We raced in late because we'd seen Royal helicopter land and had to stop and see P Charles,DD was so excited, felt like an adventure, we ran into the clinic . DDs came out very angry. She's put on a bit (52k now she tells me) but she's fed up being asked if she's happy/how's she feeling etc. she's a girl who doesn't really like attention and we talk a lot at home about stuff anyway.. She feels annoyed that the councillor is constantly trying to find a big issue. Councillor, understandably, was a bit stressed and really gave me no feedback after so it all felt a bit flat after the excitement.
Dd really doesn't want to go back. I'll make her though, but I do understand how she feels.

Hi Dry, can totally understand where your dd is coming from. My dd says that anytime anyone speaks to her they are always writing notes, says she feels like a specimen not a human . She also doesn't want to go to the appointments but the fact that she does makes me hopeful.

Our appointment went well, she is stable, gained (now 49kg) and they will send us an appointment for a month . Camhs on Thursday,bring it on!!

Hi everyone.
A day of 2 halves here. An hr to get 4 strawberries into her for breakfast. Flat out refused to eat the toast. GP apt for bloods. Hot water bottle trick worked a treat- THANKS!! Weight unchanged at 44kg
Lunch- a 2hr tantrum ended in only 4 sips of a banana milkshake. DGM in tears and me and DD exhausted
Dinner- she came willingly to the table and ate a roast chicken dinner complete with Yorkshire pud!! A very small portion but I don't care. And she's just had a slice of banana loaf and a glass of milk!!
CAMHS tomorrow

Weight up to about 42kg for both of my DD's I think. Appointment for DD2 didn't go so well, she was sulky and said nothing, hid behind her hair and cried when I tried to get her to say more. The nurse said she wasn't surprised, she wasn't expecting anything else from DD. She told us about another family, where the mum insisted she was going good to keep giving her daughter milk until she was 18 'because she loved her so much.' (One of the things DD doesn't like is the way she's always talking about her other patients. I'm running out of excuses).

I have to start putting spread on her sandwiches.

How's everyone?

Hi Calm
Not a great day here. DD didn't sleep well which allows those 'gremlins' to take control and she was up binging and then purging. Had to get her up for blood test and that put her into an even worse mood!. They are keeping a close eye on her because of the risk of re-feeding syndrome and I'm terrified that the vomiting will upset her electrolyte balance and she will end up being hospitalised.
I'm trying to take each day as it comes but I am starting to panic about going back to work. I have a sessional job in schools and am off for the summer just now but I cant see how I can work for the foreseeable future. How do you all manage?

Hi Lakeland. Know all about the not sleeping,, takes a huge toll on the next day. Thankfully dd doesn't purge so that is something I don't have to worry about. Interestingly dds electrolyte balance went haywire just before she was hospitalised and had to drink liquid phosphorus and potassium....grim.

I'm also in school, been signed off by gp for last six weeks but going back for last week of term. Older dd back from uni so will be with dd.

All cases are individual. From our perspective dd had very, very early intervention. She has motivation to improve, she has very good insight, she doesn't addiitionally self harm....however, her thoughts are still disordered. we are by no means out of the woods but I feel there is a future.

How is everybody?

More concealing going on here. Chocolate, breakfast bars and nuts hidden in socks, then flushed down the toilet!

On the plus side, we have planned to have one good thing a day to look forward to. So far it's been a trip to the seaside, shopping guide for clothes, dying hair, going to the fair with friends, and a friends bbq. It's helping.

Weight lost this week though.

Hello all.

Not good.

Another CAHMS today. Apparently she hasn't put on 2kg at all.....case worker suspects she was loading up with water before the other meetings which were all after school. Today was this morning. I know you can be heavier at the end if the day, but by 2kg?
This means that DD hasn't put any weight on at all. She hasn't lost any either.
I really thought things were getting better. Now I'm a bit despondent. She's saying all the right things but actually doing them is another thing.
I'm also worried as I start a new job which is full time in a couple of months and really don't know how I can take time off for all of these meetings.

Sorry for the rant. Feeling really upset.