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 thnks Lougle ...I agree there's a risk of them dragging their heels if not under any formal pressure to act. I guess then, only problem with us going ahead & applying might be the fact that these diagnoses for DD are v v recent so to date school hasn't been aware of them ( they barely know her due to prolonged absences) & hence not had an opportunity to offer any extra support. So they may just advise we start by school offering some lower level interventions to start with, withoutan EHCP? We'll just have to wait and see I guess.

When do you hope to hear a response to your kick ass letter?

@Roolet12 what are the school doing about her prolonged absences? When mine wasn’t well enough to go to school they got the home and hospital team involved and he had home tutoring. I think this really helped the EHCP case. I agree with @Lougle start the process yourself, then at the same time you can tell school what you have done and why that’ll keep them in the loop regarding her new diagnosis and might spur them into action.

Hi All.
NelleBee sorry to hear about your DS, it does sound like an ED doesn't it? It's interesting your doctor wants to give him meds for his low mood and anxiety as our psych won't give DD anything for her low mood, anxiety etc etc until her weight is restored to a more healthy level and she's thinking clearer.

All can you tell me if the advice we have been given seems 'usual', no meds (depression) until DD's weight is at a more reasonable level? She's got a BMU of below 1st centile at present.

I keep thinking the meds might help her be able to eat? But apparently it needs to start with her at a better weight.

@Roolet12 they might do that, but you won't be any worse off. If school don't know, then perhaps emailing them to update them and ask them what help they can give would be wise. That way, you'll have it on paper whether positive or negative (can you tell I've been in this game 12 years and I'm a bit of a cynic?)

@SoTiredNeedHoliday I think there are two schools of thought. We know that extreme weightloss/starvation causes problems with cognition and depression. We also know that those issues tend to resolve as weight is gained. So it's reasonable to see them as a 'side effect' of the eating disorder, and the NICE Guidelines state that antidepressant/antipsychotic meds should never be used as a sole treatment for ed. However, the other school of thought may be that if the mental health problems are so severe that they hinder progress towards recovery, then short-term medication can help overcome those barriers.

It sounds like with your DD, he's not convinced that the depression and anxiety are independent of the eating disorder. In other words, if she didn't have the eating disorder, she wouldn't be depressed. In which case, 'food is medicine' applies. If she's still low in mood when her weight is up, then they may reconsider.

For DD1, it is obvious that she has a lot of generalised depression and anxiety - she worries about Covid, worries about death, worries about being bullied, that nobody believes her, that her food might be poisoned, etc., so medication to clear all of that will help her to focus on getting better.

@SoTiredNeedHoliday we first discussed medication for his mood in Jan 2020 when the eating wasn’t so much an issue. He hasn’t been physically seen by anyone in CAMHS since then due to Covid but I have telephone appointments. They have sent an appointment for his physical observations to be done at the end of April. He was having them done every few months as he gets melatonin for his sleep, but he had been doing a bit better and was gaining. Now he’s really gone downhill.

I was speaking to my mum earlier who said he’s been refusing snacks after school too, I at least thought he was still eating those. So far today he has eaten most of an egg sandwich and some crisps. He’s just gone to my mums for dinner and she’s made salmon and broccoli as they are his two favourite foods. Just a shame they aren’t calorific.

Sotired the med that seems to make the biggest difference to ED as far as I can make out is olanzipine, it helps quieten the ED voice and stimulates appetite. You may have to ask for it though.

Dd is getting the final assessments for ASC after Easter so once we've got the definitive diagnosis I'll apply for an EHCP as well I think. She's going to need a fair bit of support to get through her GCSEs.

Oh God, as if there wasn't enough to worry about...

Dd, who has lost weight for the second week in a row and is now down to 88% wfh from 92% a fortnight ago, was allowed out to meet a friend in town for friend's 16th birthday.

They were going to get bubble tea and walk on the beach, I was told.

Except they then met up with 3 other friends, went to one of their houses and shared a litre of vodka and a litre of Monster mixed up in a jug and drunk with straws...

She had the sense to call home for a lift, at least - and is now asleep on the sofa where I can keep an eye. I'm so worried - she's had probably the equivalent of a bottle of wine, in a body that is so ill equipped to deal with it. Do you think I'm OK to just observe, or is there anything else I should be doing? Stressed!

Oh Ana that must be a worry. When did she drink it - any chance of working out how much is still in her system?

Nell would your DS have a sauce on the salmon (say teriyaki) and some noodles - it would increase the calories a bit? Welcome by the way!

We I had a tough day yesterday - DD felt we challenged the ED too much in terms of dinner (spanish tapas) and had a huge cry and self harmed for the first time in two days. I was left feeling yet again that I was doing everything wrong.

Anyhow, she's feeling stronger today and has got her recovery head back screwed on... She's much more cognitively 'there' and more & more flashes of 'old DD' are coming through. Most of all though, she laughs and laughs and it makes me cry even typing it but it is such a joy to hear that laugh again.

Oh and birthday in 3 days - you're all most cordially invited to her 18th party!

So lovely that your dd is laughing again myrtle - a very happy birthday to her, and hoping that the next one will be both ED and lockdown free!

Dd has woken up, ate a tiny bit of the fajita wrap she was supposed to have for dinner, drank a lot of water and is lying on the sofa messaging her friends - so presumably she can see straight. She's slurry and slow, but 'with it' enough and making sense. Apparently they drank the whole jug in half an hour! Between about 4 and 5ish. So I'm guessing at least half is still in her system.

@AnaCanDoOne I'd be a bit worried that your DD seems ok now because of the caffeine. It masks the effect of the alcohol. Alcohol metabolises at 1 unit per hour after finishing drinking, so she'll still be drunk for a good few hours. Her body will be clear by about 6 am. Can you check her pulse and her respiratory rate? She should have a respiratory rate between 12 and 20 and a heart rate between 60 and 100. If she's outside of those, I'd call 111, tbh. Make sure she lies on her side.

@myrtleWilson she's so lucky to have you

DD1 has really struggled today. Ate breakfast well, but then refused snack and lunch. Postural drop and heart rate jumped by 50bpm on standing. Was all ready to go to hospital when she accepted lunch, so had a cheese & mayo wrap and a hot chocolate pudding. Then this afternoon she got really angry, started to hurt herself by pinching herself, punching her bed and biting her hands. Gave her the rispiridone 20 minutes before dinner but it hadn't kicked in and she tried to barge me on the stairs. Then she had full on fear at the dinner table. I got ⅓ of the pizza into her and a GU zillionaire cheesecake, then she went to bed.

Thanks, Lougle, her pulse is on the low side at just 60 bpm but she has been lying down for a couple of hours now, breathing seems normal. We are going to go to bed now and she's coming in with me so I can keep an eye.

I hope you all sleep well

Oh gosh @AnaCanDoOne that is a worry. I think I’d be watching her on and off all night...hope she is ok
@myrtleWilson I think you are doing everything right esp if your Dd is laughing again! It’s such a roller coaster. You must have massive mixed feelings about her turning 18...
@Lougle sorry you have had a tough day hope,tomorrow is better.
Today has been ok I guess. I spent all morning cooking and baking as I had my COVID jab this afternoon and wanted to make sure I had everything ready for snack and dinner before I went in case my arm hurt!
Whilst assembling dinner I caught DD doing sit ups in her room which she flat out denied even though I had just seen her doing them...she then got her ED eyes and I spent 45 mins trying to cook and run up and down stairs quietly to check up on her. Then she had the audacity to ask why her dinner was late. Tbh I have behaved like a sulky child tonight and ignored her and watched Gardeners World... I know I behaved badly as i was being petulant but her ED self is so vile and I have had enough this week.
Oh and my 17 year old told me I was too controlling today - after I had got out of my bath (after my jab whilst DD at field with DH) to drive across town and pick him up from a friends when the deal was to pick him up from the next village. So that was me told. He was quite nice about it but I guess I am not emotionally in a good place and it hurt.
I hardly get to spend anytime with my sons and tbh I miss them. It feels like they are moving away from me so quickly which is usual for a 17 and 15 year old but with DD needing me or my cooking/ planning/ shopping 24/7 it seems to have accelerated.
Just feeling blue I guess tonight. And sick of being the bad guy. DD had a Lovely day with her dad shopping for pet supplies, going to the supermarket for bits, going to the field and I always cop for the aggressive rudeness later....

Oh bless you lots don't be hard on yourself, I think you're amazing I fact I think we're all bloody amazing and should definitely get a medal or something!!

Myrtle glad today was a bit better and yay for laughing that's wonderful 😊

Lougle well done on getting the food in, when do you next speak to the psychiatrist?

Dd has struggled this evening, she's still in pain when she wees despite being on antibiotics for a urine infection 😕 she regressed to about age 5 and I had to bath her, wash her hair, sort her out and put her to bed! Will see how she is tomorrow but if still in pain will speak to a Dr.

Forgot to say ana hope your dd is okay, good she is drinking water and ate something.

Nell if your ds likes salmon I'd cook it in oil or butter and also add butter and oil to the rice or whatever he has with it. My dd also likes salmon and we do a salmon and pasta dinner cooked in a white sauce about once a week. It's really yummy and must be about a gazillion calories as the white sauce has double cream, mascarpone, cheddar cheese and butter in it!!

@Girliefriendlikespuppies do you think she has a degree of cystitis? Cranberry juice and fluids +++ but I know that is difficult.

We see the psychiatrist on Monday. Slightly anxious that we are seeing her at a different clinic so the scales won't be the usual pair. I'm sure they'll be accurate...but it niggles. We ended on 2342 calories which is a small miracle. But it's been a tough day.

Yeah it must be Lougle it's so hard to know with dd as any discomfort/pain is the end of the world so getting a true picture of what's going on is hard!!

I've just had another think about how many calories dd is getting, it says on the double cream carton that 30mls is 140 calories, is that right?! 🤯 If so she's getting quite a bit more than I thought as easily has 100 mls on her porridge. So the oats would be around 300 calories but the cream would be over 400. So by the time you add in a small amount of milk and her smoothie breakfast is more like 800 calories?!!

Anyway she's woken up in a much better mood and even said she was hungry for breakfast

Yes, cream is amazing. 4.6 calories per ml. So your 100ml is actually 460 calories.

DD1 is having a very bad day. Complete refusal of any and all breakfast. I made a chocolate and banana smoothie and she wouldn't drink it. Yelling and screaming. So although calories have gone in ok, over the last two days only yesterday's breakfast was eaten willingly.

Oh dear I hate to say it Lougle but was she not better on the olanzipine? I saw someone else on the fb page say that respiridone didn't help at all but the olanzipine did so not sure they can work in exactly the same way? Maybe talk to the psychiatrist next week and see what they say.

Yeah I can't believe that about the cream, so dd is probably getting over 2500 calories a day which is better than I thought.

Double cream is the business, it's always on the shopping list here. Hope your dd is on the mend soon Girliefriend, none of our dc need extra health issues on top of the ED.

Dd has woken up full of the joys . She slept well, no vomiting or even getting up to wee or drink more water in the night. She's eaten a hot cross bun and made home-made banana smoothie/cream type thing and is demanding to know why I've cancelled her Zoom dance class... I'm thinking her friends perhaps had the lion's share of the booze after all.

I, on the other hand, am shattered after lying next to her making sure she was still breathing all night...

Hear hear. Thank god for cream. My new best friend.

@Lougle hope rest of today goes better....do you think the respiradone is less calming than the olanz? If necc, after a fair trial, cld you revert to the olanz or was the sedation side too problematic?

@AnaCanDoOne hope your DDs head isn't too sore today and rest of the night was uneventful... not looking forward to older teen yrs too much😮

@Girliefriendlikespuppies sorry your DD is still suffering. Hope the pain lets up today & the anti bs do the trick. ...

@NelleBee hope DS's intake today is no worse and you can manage to sneak some extra cals in while you wait for nxt appt. Thnks for the EHCP advice. So helpful talking to others who have experience with these things. During DDs regular absences at her new school in yr 7 ( became ill end of yr 6) there was no particular provision for home schooling etc - she was in hosp a couple of times so obviously too ill for anything school related to even be in the equation. Plus nothing had been diagnosed back then, although as parents we felt pretty sure that certain of her learning difficulties ( esp maths) were indicative of some more complex, underlying issue. One silver lining of her recent IP admission ( if you can call it that) is that their resident psych & SALT did lots of assessments with her and identified some issues which they think, warrant an EHCP. Frustratingly, still waiting for the full reports to appear......

@SotiredNeedHoliday i font think your psych is necessarily typical of a common approach to meds. Our DD was prescribed olanz and sert in run up to IP admission when sge was v ill with WFH was around 75% and cognitions all over the place. Yes she has an anxiety disorder but everyone agreed that her mood/ anxiety/ aggression at that point was v much related to her ED and low weight. The meds were a means to an end (and still are even now at 95%.). If weight gain simply isnt being achieved, and mood/ emotional state is an obstacle, I don't see the relevance of determining whether it is or isn't a symptom of the ED itself. I'd push for them.

@Lottsbiffandsmudge yesterday sounded tough. You need you time and sulks. I know I do. Do not feel guilty. It's how we carry on.

@myrtleWilson hope today less punushing for DD and for you - you're still obv giving ED a run for its money & we know that's never quiet or easy....

I'm hoping today better for DD too. Since being discharged ED is trying its level best to reassert itself over snacks - "I'll have it with lunch/tea mummy, I just don't feel like it now"- yeh right. So food throwing & dtink spilling was back. Only positive was I felt that DDs actions were more deliberate and attention grabbing than born out of the usual depths of anxiety/despair - a small plus I guess.

Jeez soz that post was so waffly...

Roolet I'm whispering this but at times I've been quite glad that the pandemic has given me a year free of teen partying, watching the clock, horrible boyfriend type stress... Pretty sure they're going to hit all of this hard once lockdown eases though and I am nervous as hell about it.

Although dd is saying she's off drinking alcohol for life . Yeah, I seem to remember saying that the day after I raided the Christmas pudding brandy at the same age...

Good luck for your dd's eating today, and I hope you're right that there are signs of hope.

Glad that DD is okay ana - and to the off alcohol for life!

Just wanted to share a step forward from DD today... she's wearing leggings - not joggers. They are coupled with two oversized jumpers but nonetheless a breakthrough!

Terrible day today. DD1 hasn't eaten anything. Her BP has a postural drop and her heart rate rose by 36bpm on standing. I've just phoned paeds assessment to ask if they think she needs to be seen or if she's ok at home. The Dr said it is a grey area so she's phoning her registrar.