Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

@Girliefriendlikespuppies hope DDs first day back goes ok and she manages
food unsupervised. I know ours too will refuse to go in if it involves being different so she will push to eat snack unsupervised. I think we can trust her esp with sibling always nearby but going to be a minefield of negotitaions ahead I fear...
and @Lotts and @Valleyofthedollymix abd everyone else ( sorry only had time to skim posts) well done on getting yours through their first sessions bsck. No mean feat.
@afewtoomany so sorry you're in this worrying sit. I hear you on the revolving door concern. Our DD is nearing discharge from local unit and others there have been in more than once.
In the past we have also considered different IP units for our DD - this was her first admission but she was only 12 and we had big reservations about local unit- I will dig out details & post these up later on. But basically I rang a couple of others and asked about availability back in October- both west London based. If going for a private admission, process was relatively quick I think( but expensive.) Worth invedtigsting yoyr area though if you can. CAMHS can make referral to a diff unit if there's a case for it. We were offered an intensive day treatment prog for DD early last yr at the Maudsley but due to covid it was only virtually and thus totally impractical. As well as refeeding we needed behavioural patterns broken which simply wouldn't happen at home so turned it down. But if that's an option for you ( either virtual attendance or physical attendance) I believe a gp can even make a referral to SLAM?.
Fairly shitty day yesterdsy with another call from hosp re attempted slerpover so back to the 1 hour round trip twice a day to get DD to the unit & back. She melted down in car last night at pick up so had to call staff over to help calm her down - thrwatening to kill herself if she has to keep coming in daily, just wants to stay there or home in blocks, not the day plan. I explained her behaviour had forced this on her but she can't reason simple things when so distressed.
Also had copy of speech lang assessment which indicates a definite SAL disorder - her inability to communicate as she would like is really beginning to create huge problems so praying ongoing support will help make a diff. So important in this game to be able to communicate well enough..
First session at school will be Friday - just 1.5 hours, in morn until breaktime, them bsck to IP unit afterwards for post mortrm. If we manage that then build up nxt wk to include snack and ( major eek!) lunch before final discharge.

She was on "under therapeutic dose" for 6 weeks,then told to move up to minimum dose,so I'm.not sure how long you guys are skimming at low doses.maybe that's a factor?

Thanks so much all.
She's around 75%, I know her bmi is in the low 14s. She's nearly 16. I'm going to ask GP about slam. But definitely think virtual wouldn't do any good. There are private units not far, we are in N London , I know there's Ellern mede, rhodeswood? I've heard horror stories about Rhodes wood, got changed from Rhodes farm which got shut down. So they are private but the NHS have 'bought' their beds. We definitely aren't made of money, but I'm willing to stretch and pay whatever I can to ensure she gets better! You're all so kind xx and will def look up that fb page

We're back from clinic. 200g weight gain. Obs still not great, but ok. Back to discharge weight after 1 month out of hospital.

Just taken a call from HoY as DDs friends spoke to assistant HoY as they were concerned as DD had ‘run off’ after going to the cafeteria to ‘collect’ her ‘welcome back Year 9’ cupcake and not being able to bring herself to take it....a friend who does not know about the ED was apparently trying to persuade her to take one....
Had DD home for lunch and according to her she has had a good morning, eaten her snack and had nothing to report..... her snack was my cake and a satsuma. It’s not a cake thing just an unexpected cake thing..HoY pissed off with her assistant HoY who just logged it on the system and didn’t call me or email. She only just saw it at 2.30-m incident happened at 10.30am. The assistant HoY is my DS2s English teacher and he/we have not been impressed with his teaching seems his HoY img is similar!1
Geez can we not just have a normal day at school!
Anyway hope she didn’t bin my snack or exercise whilst she as awol.
500g gain today so she is now 91%wfh....I feel there should be a badge or something.
Next week’s weigh in will be more critical to see if she is still gaining whilst ‘eating’ snack....

@Lougle great to see a gain and that you are back at discharge weight.
@afewtoomanychoices my Dd wen to 77% wfh BMI 14.7nat her lowest and we only just avoided IP... sounds so tough

Wow @Lottsbiffandsmudge you definitely deserve a badge!!!

At my CAMHS meeting today KW was starting to float a ‘puberty’ test....which would involve DD being totally naked in front of a paediatrician. My god can you imagine?
Got to get her weight up as quick as poss so she starts her periods naturally as there is no way I want her subjected to that....
I am literally going to hang out flags when she starts them....

Lots for you 🥇

I can't believe a puberty test is even a thing 😱 there's no way I'd subject dd to that, she would be mortified and humiliated. I'm sure periods etc will resume once the weight is right.

So dd is home, first day appears to have been a success 😁 she said morning snack was difficult and she only managed a few bites (she was not having any morning snack at home so not surprising it was tricky) however lunch and afternoon snack was 'fine' and she said she even managed a couple of sweets her friend had (no idea if that's true but hoping it is!!)

She is very happy, said it was amazing to see her friends (she has always struggled socially so this is her first gang of proper mates) and they all swapped gifts for all the missed bdays over lockdown.

I'm really relieved and cautiously optimistic that school is going to do her some good mentally.

Has been a weird day for me, first time on my own in months!! Got out in the garden and enjoyed a dog walk at a more leisurely pace than dd normally allows 🙄

Puberty test sounds horrific even for any girl that age,esp not for one who is so body conscious...

Well lil zoo is home,and has finally eaten today- 2 mini wraps,mini pot hummus some ham and celery,peppers and tomatoes.has retreated to her room with a bottle with squash in and a mini pack love heart sweeties to eat whilst she edits

Awaiting schools timetable for the week.shes keen to do a number of afternoons given fave subjects.im not sure this is a good idea,but have suggested possibly trying a few days but she gets dizzy etc she's off.not up for discussion with anyone(no matter what school says)

@Lottsbiffandsmudge they normally go off a parental report. Surely it's enough for you to say 'a bit of hair under the armpit but none down below' or something like that.

Period changes are weird anyway. DD1 skipped about 3 periods when she was 37kg, but they came back again. She's 39kg now and having a full period. Other girls stop at much higher weights.

@Girliefriendlikespuppies glad the first day went well.

Well done @Girliefriendlikespuppies DD hope if carries on well.
The problem DD has is that she has never started her period so we have no idea if the current situ is ‘normal’ or weigh induced iyswim
Just had a melt down as I asked her to not go outside to throw a ball at the rebounder. This seems to be her new thing. Just got back from 40 mins at the field and she has core later and she still cannot sit down for 5 minutes..... so infuriating, I am prob over reacting but her inability to ever just sit bloody still is driving me mad.....

Now we've had dinner. She refused her chips and beans, leaving her well short on calories. I offered Fortijuice or a smoothie to make up for it. After tears, screaming and tantrums, saying her tummy hurts too much, she accepted the smoothie. Only 100ml. She's gone up to use the loo and promptly vomited the lot. Smoothie, ibuprofen capsules, her dinner. All gone. Vomiting wasn't deliberate but that's ⅓ of her intake for the day gone 😒

Do you think the vomiting is anxiety related Lougle? Is she normally a sicky child?

I don't know. She's not usually a sicky child at all, although gets generally unwell a lot.

The first time she vomited was when we tried to go from 1700 to 2000 calories. She didn't eat the full plan, so we gave a Fortijuice top up. Cue vomit. Then there was another Fortijuice induced vomit. Then tonight, a smoothie induced vomit.

The trouble is, if we just accept DD1's food limits, we'd be on about 1200-1400 cals. I'm reading that you've got to persevere, but then she vomits and says 'I told you I wasn't feeling good!'

I took her sitting/standing BP tonight. A drop of 13 on systolic bp and a rise of 44 in HR on standing. She was freezing cold despite being under blankets all evening. Poor girl.

Have they ever checked her stomach for any issues? It just makes me wonder if there's anything underlying that would cause her to struggle with food/eating.

No they haven't. I did ask the paed if there could be something physical but he said he was confident that she presented as having a (complex) eating disorder.

Over 50% of her calories are coming to her in the form of cream, butter, and chocolate brownies (which have butter, cocoa, chocolate and chocolate chips). I just couldn't get enough calories into her with normal foods.

Tonight she had 90g pork, 2 chips and 1 forkful of beans. Refused the rest. Then I made her smoothie with 45ml milk, 2 teaspoons hot chocolate powder and 70ml double cream. So 115 ml total. Then she vomited.

Puberty test - ditto. How unnecessary, surely?? Can't a hormone profile & the relevant qu's confirm puberty status without any full frontal trauma....??
IP want to do a full hormone/growth assessment on DD as psychiatrist keeps claiming she hasn't grown at all in 18mths, despite me telling him we recorded 4cm with CAMHS last yr & shes same height as sister! He won't have it though...
@Lottsbiffandsmudge sorry about cupcake episide but the 500g is great. Well done!
@Girliefriendlikespuppies hlad first day back for your DD sounded positive. Sweets too! That's amazing! Hope it continues...
@Lougle sorry you had vomits this eve..stressful . Would DD tolerate you upping cals in snacks a bit more and reducing main meals so intake is more spread out? At least until her tum can cope better with increased amts?

Also @Lougle - have you checked out MCT oil?? Super high cals. Good to add to smoothies & other stuff ( I used to add some to fortisips)

lougle - gosh that sounds so draining (for you both) How is she with smoothie outside of top ups - am wondering if it is a top up issue, a liquid issue or something else? If she's like DD, her coldness will rise when she's scared/anxious too

I hope those going back to school are doing okay - girlie sounds like your Dd has had a great time, lotts hope the cupcake incident is behind you all now.

I've hit a real low in my energy to manage which ironically is coinciding with DD having a renewed focus on recovery. I think what is happening is she hits a new low, I take it badly, she re-bounds and is pushing forward with next set of recovery plans and I'm trailing in her wake not quite able to match her energy.

Tonight we all ate together and then had family film night - we've not eaten together for about 10 months as hitherto DD needed constant prompting with every mouthful and the anorexia would paint a false perception of our portions and tell DD she was greedy. Dinner was pasta arrabiata with chicken - uncontemplatable a couple of weeks ago

We're still very much in the thick of it but DD seems to have changed a mind-set and now recognises how much she's missed out on and the fact that anorexia never kept/keeps to its promises. That said, the anorexia is kicking back strongly but Dd is being awesome in saying we have to up the ante to make anorexia feel uncomfortable.

I've said before on the thread that this is a game of snakes and ladders, at the moment I feel like DD is searching out the ladders but the snake is still moving around to catch her out.

I hope that posting these tentative steps into possible recovery aren't upsetting for anyone - please do say if it is too difficult to read.

And finally, DD gets her covid jab tomorrow! Her GP accepted our request for her to be considered as part of group 6 on mental health and physical grounds (i.e. not risk of severe covid but more that anything that knocked her out for a couple of days could increase anorexic risk) If any of you have over 16s and want them to get the vaccine do shout out and I'll share what we said...