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

Lougle DC can physically eat, just not enough. They have a genetic condition that makes it harder to put on weight and requires a high calorie/fat/protein diet.

A PEG was first suggested for DC3 before the ED diagnosis. The decision was purely a clinical one. DC's weight was dangerously low and exacerbating physical health problems. Prior to the PEG insertion DC had had NG feeds for a few days. I wanted to continue those feeds for a while to see if we could increase weight and then maintain with oral supplements. DC's team weren't having it, telling me short term NG feeding wasn't enough - 6 years later we still aren't at 85% WFH or BMI (I found the earlier discussions on WFH on here interesting. DC's medical team prefer %BMI whilst CAMHS (who won't deal with the ED as it's not their team) prefer WFH).

DC5 had the ED diagnosis when we started discussng enteral feeding. The combination of ED, ASD and genetic conditon made putting on enough weight impossible. Without the interplay between ED and genetic condition I don't think he would need a button, which is what he now has.

Looking back both had a feeding/eating disorder from weaning, NG top up feeds as a neonates, fortifying food, oral supplements from toddlerhood which I, naively, attributed to other things.

Girlie good look for the weigh in.

myrtle DD is making amazing progress, she wouldn't have managed it without you.

Apologies for the long post!

@Lougle I'm sorry it's so tough ...scream away. That's what we're here for. Can feel like the testing to limits never stops so vent.
@myrtle that's fantastic to hear. Your DD certainly is taking on her demons by the sounds of it. Go her! Long may this progress continue....
@Girlie good luck with your return to work today...hope having another focus helps.
@EDNC my goodness you have had to deal with so much by the sounds of it. . Hope that sharing here will help!

DD has managed to go in for her second short morn at school - first time tackling snack there. Nervous for her but hoping she can do it. Bracing for the backlash on pick up if Friday was anything to go by!

I've got threads on here where I say I'm concerned about her weight. In 2014 she was 6½ years old. I've just run her height/weight through my WFH calculator and she was only 84% WFH then! I think she's been failed for a very long time.

lougle I'm so sorry things are so difficult right now
Myrtle that's amazing news.
Ednc you sound like there's so much going on.i hope you have RL support with it all
Girlie good luck with back to work

I'm feeling rather shocked.lil zoo adamant wanted to do pm schooling this week as means majority core subjects,which she loves,but the not eat or drink til 430 scared the bejingles out of me..anyways,she appeared 20 minutes ago asking if I could walk her in early so she can spend lunchbreak with her friends and casually asked for something to eat.without any promptsI reeled off a list of what we had and she sat there and ate a buttered toasted cinnamon and raisin bagels and a soy milkshake.no fuss whatsoever.ive no idea what prompted it,but long may that continue

Wow that's wonderful, @Stilllivinginazoo. Long may it continue.

I'm rewatching Grey's Anatomy as a little treat and the episode with the bomb has been on. I think this is my latest favourite song:

Lougle gosh I don't know how you are still 'ok and functioning' I am really sorry that things have been so tough for so long. At least you had her eating some brownies, at this stage any calories are good calories right?

I think my DD will always have been on the very low side, I was not concerned though as she ate well and was super sporty. Now though there is no chance i'd get a brownie into her. However, its the mental aspect that worries me a whole lot more than the physical, even if I watch her eat for the next year and she gets to a 'normal range', how do I know if her mind will repair and she will see that she is not fat, she is not ugly and she is worth all the help in the world.

What support has your DD's been given to address the mental issue of AN or ED's in general?

We have been given a camhs appointment in a weeks time, far faster than I imagined. The GP only referred her 2 weeks ago, the nurse called and asked questions etc so I guess she triages pretty high on the list.

What expectations should I have of what Camhs might be able to offer? It sounds pretty hit and miss depending on where you are etc.
Everything I've done so far has been private, dietician, psychologist, etc just so I can start before the NHS can see her.

I think provision varies. DD1 has been out of hospital 5 weeks. She's seen a psychiatrist once, a dietician once and a specialist mental health nurse 3 times.

DD1 just wants to die. She's very sad and she doesn't want to feel that way, but it's the way it is. She's had another chocolate brownie for lunch because any calories are better than nothing.

I phoned the day assessment unit and ended up speaking to her consultant. He said he's got 4 kids with ED admitted and he happens to have her CAMHS nurse there to discuss them. He's adding DD1 to the list. I've raised the issue of NG feeding. He said it's not a no. They normally don't like it because of the affect it has cognitively, but in some cases the cognitive issues are there because of the extreme weight loss and it's helpful to just get the calories in. He's going to phone me back.

@Lougle best of luck with that. The cognitive issues must be more complex with your daughter and it doesn't always sound as if this is taken into account.

@myrtleWilson am really happy to hear about the progress. Very inspirational.

Good luck to anyone else who's got school, weighing day etc. Ours was today and DD has lost 200g to add to last week's 200g and then suddenly it's looking like half a kilo and that's depressing. However, I'm not massively worried about it as it's more or less maintaining in the week that she went back to school - more hours away from us, harder to fit in all the food, more energy expended, more self consciousness around food etc. I don't think it's bad enough to change our policy (4.5 days at school, light/no supervision).

Haven't heard back from the clinic as to whether they agree.

I'm still confused about the WFH parameters. All my children have always been towards the bottom of the centiles - their height is usually around 40-50 centiles higher than their weight if you see what I mean (e.g. 75th for height/25th for weight; 50 for height, 10th for weight etc). And until DD went weird around food and actually lost weight, I think they've been pretty normal just on the skinny side. Surely some children are at the thin end and some at the bigger end and that's normal? Should all children be 90% + WFH?

WFH only calculates the average weight for height. So if they are 100% WFH, their weight would be in the middle of 100 weights of children who are the same height.

A Former Poster sneaking on in heavy disguise to say how lovely it has been to read myrtle's last few updates. When I think back to the situation at the beginning of thread one, this sounds so hopeful.

But you ain't seen me, right

@lougle I know that but I still don't understand why there seems to be an expectation that every child will be within 5% of bang on average. It doesn't seem to take much account of natural variation? Am I missing something?

I just think about my adult friends who are my height (5'7). I weigh 10 stone which is a midpoint BMI-wise, but one of my friends weighs 8 stone and another 12 and they both look perfectly healthy to me.

My iPhone sends me old photos in that way it does and it's really striking how much slighter DD is than her best friend right from the get-go. They're both lovely and healthy (then at least) but they're such different builds - mine has the physique of a long-distance runner, while hers is of a swimmer (and they are in fact the sports that they did well in).

No you're not missing anything. Eva Musby writes about it here

Well lil zoo had a good day.came in thirsty...but not particularly hungry.i can't help but feel deflated/disappointed.she agreed to a little snack.had a bag of pea crisps,and u said she needed to have dinner around 6/630(usually eats later but I hope she might want something else tonight if eats earlier)she's already said she wants nush cream cheese,veggies and pitta tonight nothing else

Lougle that's good the consultant was going to give your dd some thought, Hope he did call you back?

Valley how much calorie wise are you getting in now? I know you weren't keen on hiding calories but I honestly think it's been essential for my dd. The healthy weight bracket does seem to be very wide at times, I think for someone our height (I'm also 5'7!) it's anywhere between 8stone 5lbs to 11stone 5lbs. I'm also bang in the middle and I think dd will naturally be similar.

Dd has just done well with dinner and pudding, have discovered dd will eat a biggish bowl of rice pudding with lots of added double cream so that's on the menu twice a week!

Yay for rice pudding.

The consultant phoned back and has suggested we discuss NG feeding at the EDT clinic tomorrow. He says that he's very laid back about it all and that if the feeling is that DD1 needs NG feeding and then possibly a referral to have a PEG, he's fine with that. So we'll talk tomorrow with the CAMHS nurse.

Fingers crossed lougle - I hope your consultant can be the champion you need.

Girlie - rice pudding whoop!

still - bank those wins and keep on keeping on - but I get the frustration and sadness

valley maintenance is good - we are all having to adapt to changing circumstances around activity levels.

ana - thank you! That is so kind of you. I am amazed at DD but am being cautious - it could stop tomorrow, but even if it does, it won't wipe out what she has already done. So a foundation for recovery is being laid.

Lougle the best consultants are the ones who listen. Until your last post I thought the same as Valley, they are treating the ED in isolation without regard to DD's LD and genetic condition. Do you have contact with a LD nurse?

The CAMHS nurse has asked their LD nurse to get involved. It feels like things could move forwards. We've still only got up to 936 calories today - 4 chocolate brownies and some crispy potatoes. Refused the sausage and sweetcorn. But I feel like I could deal with that if I knew DD1 was getting her nutrition anyway.

It sounds like things might be moving on Lougle. I hope the Consultant comes through. I would feel the same I think, if I knew the nutrition was ‘solved’ you could concentrate on making food (or rather the actual eating of food) less of an issue.

Myrtle that’s fabulous news, everything crossed that it continues.

Girlies, rice pudding is one of my comfort foods - there’s something so warm and ‘buggy’ about it. Hope she keeps enjoying it!

We’ve got a weigh in today, and it might be the last one. I’m nervous because it is the first one since DD went back to school, and I really want her to still have gained. I think she will though, she seems more determined over the last couple of weeks.

I need to buy scales and a BP monitor before next week. I’m still not happy with monitoring DD at home and her not being seen by HCPs, but feel like I can’t be bothered to fight it - path of least resistance. Any recommendations? Looking on Amazon I’m going to have to fork out extra for a small cuff, and I suppose I’d better buy the best (more bloody expensive) scales I can find.

Wow, exciting and nerve wracking for you @exLtEveDallas. For BP machines, I went for an Omron M2 monitor. It's what they use in clinic (well they have the M6). Having said that, I know the Boots BP machines use Omron cuffs, so I suspect they're just rebadged.

The small cuff is also available from Amazon.

Scales are scales really. You can get scales that link with an app, which is helpful to track weight easily.

Only 200g gain here today. Cant decide whether it's good or not. Full week at school and her friends have said she is doing unnecessary walking so I am not surprised. I will try to add more calories into her snacks.
Glad things may be moving forward @Lougle
We weigh at home @exLtEveDallas and always have but dont do BP. I think with scales it is just using the same ones at the same time every week. We do first thing Tues after a wee in PJs

Dd has maintained and is now exactly 54kgs, I'm pleased she's managed to maintain at school. I've told her as long as she doesn't lose weight I'm happy for her to not be supervised eating so dd is relieved as well!

For any child going back to school I'd take any gain, even 200g, as win. Hell, I was accepting of 200g loss.

We also weigh at home and have fairly accurate scales that we put away other than on Monday mornings.

I know I'm going to have to find more calorie laden foods as DD is eating lots and varied stuff but it's clearly not enough to gain weight. She is very resistant of smoothies and I really don't think secret calories will work as I think it will make her freak out if she gains weight in an unexpected way. She's started enjoying granola again, so lots of that maybe, and I'm finally going to get tough on plant milks.

Well done for gains and maintains! So reassuring.

We've had clinic today. Sunday's bloods were ok. But her blood pressure has a postural drop today, her heart rate jumped by 33 on standing and she's lost 0.6kg.

The psychiatrist wants to try adding in olanzapine on top of the fluoxetine from today, and she'll phone on Friday to see how we are getting on.