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

Sorry meant to add - she just about manages to maintain her weight so professionals dismiss us. She is extremely thin, pale, has bad skin and is lethargic. I could cry for all the life she's missing out on because and she won't eat and worry about her muscles wasting.

Welcome @Worriedaboutitall. So hard for you all to have this constant worry. Does your DD tolerate cream? It's super calorific, so small quantities make a big difference. The healthy food plate is such rubbish.

@Lougle thanks, sorry your dd is struggling so much too.

She will eat cream, and other high calorie foods - which is a blessing I know. At the minute I'm happily giving her jacket potato covered in butter and cheese every day for her tea, the next problem is she eats incredibly slowly - 45/50 minutes for tea, picks it apart or mashes it together into slop then chews and chews, anything to prolong the actual eating and reduce the amount actually eaten. Then leaves 3/4 of it anyway. I'm sure this is all familiar to you guys!

@Worriedaboutitall very familiar with it! Will she drink a smoothie? A glass can hold around 600 cals if you use double cream. A cheese toastie can pack 500 cals if you generously butter both sides of the bread.

I managed to get DD1 to eat a millionaires cheesecake for snack. 200 calories better than nothing!

@Lougle tried and failed unfortunately, she likes innocent smoothie type drinks very occasionally but a real homemade one was a nope, tried quite a few different recipes.

She eats cheese on toast, but a couple of bites out of each slice, she leaves a good inch away from the crust. Does the same with crust removed so that actually means she eats less so I leave them on. It all sounds mad doesn't it unless you've experienced it.

And that's brilliant about the millionaire bites, so many calories packed in. Vienesse whirls the biscuits have about 180 in them too if your dd might eat those.

@Worriedaboutitall Has DD expressed anorexic ideas to you at all? Is your gut feeling that this is a new phase of her longstanding E.D? If so I would definitely push to see a mental heslth team again.
Weight maintenance is obviously preferable to decline but given her height increase, will be meaning her WFH ratio is declining. Do you know what it currently is? If below the 90% level you have ammo to take to your gp and insist on a new CAMHS referral. They should not simply bat you away on the basis her weight is maintaining, that's totally crap and potentially dangerous.
Xx

One other thought - in the past we have contacted GOSH ( Great Ormond St) and the Maudsley hospital for advice when not totally happy with direction of local treatment. Our son was so young when ge became ill just 8, and we felt we needed a 2nd opinion than. After doing our own research we pressured our local CAMHS team to liaise with GOsh and we were successfully seen there. They have an inpatient unit for younger kids that caters for a range of complex E.D and other issues. Not saying you need this but as a source of advice/ to galvanise your local MH team perhaps??
The website is below -
www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/department-child-and-adolescent-mental-health-dcamh/national-feeding-and-eating-disorders-service/

@Roolet12 thanks for your posts, 8 is so so young to be suffering, how is your son now?

I don't think it's anorexia, I don't think dd consciously wants to lose weight (sorry to generalise), her relationship with food has been so bad for so long I don't think she can eat normally, and the importance of gaining weight falls on deaf ears. She has all the physical problems associated with an E.D but maybe not the "usual" psychological reasons to not eat if that makes any sense. I'm struggling to get doctors to view it as an ED, because it's not started in a "usual" way whatever that might be.

@Roolet12 posted too soon, I need to measure her height at home, thanks for the reminder, I'm guessing based on her last visit to the dietitian but that was Feb 2020.

Know this may be a v long shot but wld it be feasible for you to try to organise an assessment with GOSH if all else fails? I appreciate we were technically referred via Camhs but surely worth checking whether you can self refer? They have huge expertise in all kinds of eating related behaviors not just A.N.
Our son is doing really well now thanks - he became ill v quickly and fortunately clambered back up equally quickly. It was a pretty hortific year but we're grateful he's ok for now and is proof that full recovery can happen. Seeing his sister suffer so much has, I think, made him more determined not to go back there. She is a diff kettle of fish unfortunately-she presents v differently to him and has other issues ( speech and language related) which i fear will make her recovery much more difficult.
.

You're right @TheySeeHerRowling. Just checked website and it does indeed say it has to be via Camhs or Paeds. Buggar. Sorry...i guess then it really relies on you pursuing GP and CAMHS. Has ARFID ever been discussed as a diagnosis@Worriedaboutitall?

Thank you all, it's such a relief to be able to talk and be understood. I'm sorry our children are suffering, it's so complex and frustrating when eating should be as simple and easy, but it just isn't for them, for so many reasons.

@Worriedaboutitall my DD isn't typical either. She will happily eat cheesecake, but picks at her food, etc. They are still treating her.

We went for obs today. DD1 has gained on last week, obs ok. No school until 85% WFH. Wheelchair outside. New supplement to try.

@lougle my dd will eat junk over healthy food too, but it's like she has an internal calculator that stops her eating enough of anything to gain.

I've just started reading from the top and the risk chart you posted stunned me. Dd has a long history of fainting with seizures, not epilepsy (ruled out after MRI, EEG, ECG) and not once has anyone suggested her low weight could be causing them.

@Worriedaboutitall my DD, too. She's been between 40kg last summer and 37kg at Christmas, with no calorie monitoring. Eating junk. The dietician is assuming that his we're on an eating plan, she'll gain 8kg in 6-7 weeks.... It won't happen.

@Worriedaboutitall have you thought it might be about a set of 'rules' that DD has made herself? I've been chatting to some professionals while trying to find someone to help DD and they said they are seeing a fair number of very young patients come in who have very firm rules (i think they called it rigid thinking) they have applied on themselves for some reason and the rules have affected their weight, not the concept of wanting to lose weight.
EG: i won't eat breakfast any longer or that means I am a bad person. OR I won't eat more than 900 calories in a day or I am a useless person etc

Just a thought as you say she doesn't actively want to lose weight. Surely the doctors have to take it as an ED if she is underweight and the weight will affect how she thinks and reasons and how she can understand (or not) what is happening? Can you ask for a second opinion in a reasonably quick time?

On a happy note DD saw nutritionist and it was very educational for me & I think DD started to take it on board. I was expecting a complete meltdown when we left the appointment but it didn't happen!!

[quote Roolet12]You're right @TheySeeHerRowling. Just checked website and it does indeed say it has to be via Camhs or Paeds. Buggar. Sorry...i guess then it really relies on you pursuing GP and CAMHS. Has ARFID ever been discussed as a diagnosis@Worriedaboutitall?[/quote]
I've just looked at ARFID and dd is 'restrictive' to a T. Thank you I will look into this further.

Sorry I'm jumping up and down the thread, should be working so will have a thorough read later. for everyone.

Roolet can anybody ring GOSH or just Londoners? Do they know more re ASC and AN?

@Worriedaboutitall I know relatively littke about ARFID but it sounds sim to the way your DD presents...ie restricting without anoexic cognitions around being overweight or fearful of becoming overweight. Titally agree @SoTiredNeedHoliday, the gp should take it v seriously regardless of a patient's weight loss "rationale"..as you say, weight loss is weight loss and physical complications will arise if left unchecked. It's pretty shocking that as a parent you need to push for this help. Any sustained weight loss needs investigating pronto.
@DayB1Day ...looks as though referrals to GOSH are via specialist MH services only. Guess demand so high. We are Hampshire based so they do def accept referrals country wide. I'm sure they'd have expertise with co-morbidities too as v often present together. The Maudsley offer an intensive outpatient and inpatient prog too but I assume again, via Camhs.

@SoTiredNeedHoliday glad nutritionist experience positive for you & DD. That's great. Ours h as been less so - didn't go a bundle on her..when asked to provide some v basic education around food groups etc and the importance of each, she apparently decided to tell DD that red meat is higher in fat ( DD won't even say the word...calls it the f word) than other meats and that snacks dont have to be "crap food like chocolate". Aasrgh! So she came out highly anxious, muttering about becoming vegetarian and with a reinforced view that her typical fear foods like choc, are indeed "crap"! Really did not appreciate her input, clearly not well versed in anorexic patient mindsets!

My favourite quote is 'Anorexia is an observation not a diagnosis'. In other words, it doesn't matter 'why' she's so underweight (that can be worked out later)- the problem is that she is, so something has to be done.

Hi everyone, welcome worried although sorry you've had to find us!! Has your dd had any recent physical observations done? The lethargy and skin is a worry, I'd push the GP to do some blood tests, ecg, bp, pulse and blood sugar check. Has your dd got any other diagnoses?

Sotired that's interesting re the 'rules' and sounds exactly like my dd who absolutely loves a pointless rule. I think the fact she is ruled based can work in my favour at times, it's just getting her to give up one rule in favour of a healthier one!!

Lougle Hope your migraine went off.

Myrtle sorry dinner was stressful after the beach trip. What's the plan re getting your dd to eat a bit more to gain weight?

Well my big news is dd ate a snack, a whole brunch bar and she's also promised to try and drink her milk later... this was because I agreed to take her to a near by beauty spot for a longish walk. We will see....

We have ended up in hospital this afternoon.
DD had an ECG at GP on 1st Feb and bloods at hospital on same day. I chased results last week and was told no further action by GP. Then psychiatrist on Mon had not had results from GP so I chased GP again on Mon and they said they would send them to CAMHS. CAMHS got them today and referred them to their hospital dietician who has diagnosed an abnormal QT cycle on the ECG and renal impairment and wanted to admit her.
CAMHS have managed to persuade dr to allow an admission to day assessment unit where we have been since 3pm after it took an hour to get DD in the car and then out again.
To compound the issue the CAMHS dr is at a different hospital to our hospital so I am trying to liaise between the drs here and the CAMHS dr...
Anyway the dr here said the ECG today is fine...thank god. Waiting for blood results which could be 2 hours to see if renal issue has resolved.
DD is refusing to eat hospital food. I am not allowed to leave the ward. I have had hospital food! Hoping they will allow DH to deliver her dinner in a flask. She had her snack which I brought with me.
So livid with GP. I told DD all was ok with original results as that is what they told me and so now she no longer trusts me again.
I am also worried they will insist on admitting her which will go v badly. We are doing so well at home (1.5kg on this week) and I know she will not eat the food here and things could slip badly.
Worse we allowed her to exercise when her heart was not in a good place. The GP took over 3 weeks to review an ECG taken in their own surgery and then passed it as ok when it wasnt.
Tbh I knew this week was going too well...something had to go wrong...
Sorry for rant- it was such a shock to hear all that this afternoon when we thought we were going to have a good week.