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

Lots can you talk to your ED team when your dd isn't present about the exercise, I would be really frustrated as well that they didn't just say stop all exercise. That's what they told us, even now dd is only meant to do one short dog walk a day.

From the sounds of it, it def does need cutting back on plus it will be so much harder getting the weight back on if she's burning all those calories!!

It’s lovely to see you supporting each other, it’s a lonely road. DD was 14 when it began, two years of going between 15 and 16.5 BMI, a year which seemed like forever of slowly gaining. She is now 1 year plus at a restored weight of 19 BMI. She is still clearly anorexic and needs help with every meal and is still imprisoned by food, but she has done amazing to fight and keep fighting. Exercise is difficult even now as it’s still a way of her controlling.

Hi All, can you explain what the WFH percentage is and how I calculate it? My DD is 13 and has a BMI of 14.5.

We saw the doctor yesterday and he explained how being so underweight can and will eventually affect her if she doesn't start to address the issue. I was shocked that when we left the doctors she said she had no idea what that appointment was about as there is nothing wrong with her, she is fine as she is.

Also she told me yesterday she thinks her friend (who is BMI 19) is not thin...DD would not have even thought that 6 months ago. Her friend is a gymnast and perfectly fit and healthy etc

If anyone has gone privately have you been to somewhere in London?

Hi @SoTiredNeedHoliday WFH can be worked out manually. I use an Android app, but you only download it as an APK file, so you have to go into your settings and allow downloads from unknown sources. If you want to do that, it's <a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=m.apkpure.com/instant-weight-for-height/weightforheight.geneticdigital.co.uk.instantweightforheight&ved=2ahUKEwjmpc2U3f_uAhXyQEEAHbkHAEMQFjACegQIGRAC&usg=AOvVaw3CHQiZtWvqfCaLsvXLqi6K" rel="nofollow" target="_blank">here

To calculate WFH:
Download the growth chart for girls (or look in your red book if you have it) <a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.rcpch.ac.uk/sites/default/files/Girls_2-18_years_growth_chart.pdf&ved=2ahUKEwjlvJC93f_uAhWBQhUIHZPwCDkQFjAAegQIAxAD&usg=AOvVaw0lb_K-a_Tp_PZsZVHT1DcA" rel="nofollow" target="_blank">here

1.Look up your DD's current height, and trace across to where the 50th centile line crosses that weight.

1. Trace down to see what age is on that line.
2. Look at the weight section and find the age you find in step 2.
3. Trace up to the 50th centile line.
4. Trace across to see the weight on that line.
5. Divide your DD's current weight by the weight you find in step 5, then multiply by 100.

If you don't want to go through any of that, I could look it up for you, but would need her current height, current weight, and d.o.b.

thank you Lougle, i found it pretty tricky. I've dm'd you.

Another question, how do you manage the 'mental' aspect of this ED? Have you received much support form this angle or is it more from teh weight gain angle and increasing BMI?

@SoTiredNeedHoliday I'm in London and we were prepared to go private if necessary, but my psychiatrist friend recommended that we go through CAMHS/GP at least at first. There are very stringent guidelines as to how quickly they should be seen if their weight is under a certain amount (which is the case for your DD) so I would hustle for it if your GP isn't up on this.

If you fiddle with this www.nhs.uk/live-well/healthy-weight/bmi-calculator/ until you get the 50th centile for your DD's weight/height/dob then you can work out what percentage she's currently at. For example 50th for my DD is around 53 kg.

Treatment has to concentrate in the first instance on weight gain because their brains cannot become logical until they're better fed. But then it becomes two-pronged - therapy and food.

So DD1 has just vomited the Fortijuice that I gave her for lunch, as she refused her cheese toastie. Poor child is traumatised and I'm quite dispirited. That leaves me with a target of 1238 calories for 2 snacks and dinner, which is never going to happen.

She's telling us she can't cope with 2000 calories but she lost weight on the 1700 I got into her last week.

Gosh Lougle it's sounding so difficult. We are only just starting, though I have been eating like a trooper to try and get her eating for the last few months, which hasn't worked.

I can't see a way of getting my DD to anywhere near 2,000. But that's why we need to professionals!

TheySeeHerRowling Valleyofthedollymix What can I expect in terms of contact from ED team, is it really just an eating plan to start with?

I can forsee huge meltdowns when she starts putting on weight and her clothes feel tighter because her body can actually grow and be normal size.

Hi need there does seem to be a lot of variation on the services provided by each EDT and how quickly they roll them out. Happy to detail our experience but not a template...

DD said today she was well on her way to starring on a programme I'd never heard of called 'My 600lb life'. I pointed out that at current rate of gain she'd be there in 16 years.

Our first appointment was with a rather intimidating roomful of people but primarily with a specialist paediatrician who diagnosed her with 'likely new diagnosis of anorexia' and did various observations about heart rates etc. It was due to be quite a few weeks after we went to the GP but they moved it forward given her weight (which was bmi 15) so I reckon you should demand something similar.

thanks Valleyofthedollymix
The private GP was v good but I will try and get her into the NHS as well, hopefully, I can pick a time when a nicer and more understanding receptionist is on!

TheySeeHerRowling thank you that is really helpful to hear. I'm so sorry you've been through this twice!

We were admitted to hospital during DD's first CAMHS assessment Needaholiday because of risk of re-feeding. On discharge, we had her full assessment completed but then DD relapsed and back to hospital we went...

After second discharge we had a meal plan to follow and a package of 1 x family therapy per week, 1 x individual therapy per week for DD and 1 dietician appointment per fortnight. Since then (August 2020) we've had ups and downs (another episode of re-feeding) but in terms of support we have the therapy as above, 2/3 meal support per week, 3 x IHT per week (working on self harm etc) and then a CPA every six weeks...
We're still on a meal plan of 1800/2000 per week (which is very hard).

Today was weigh in. Up to 43.5kg but I think it’s going to get much harder now, she is absolutely adamant that she is ‘fine’ now, ‘heathy’ and ‘Has put on enough weight’

She’s still below 1st centile, so I don’t think so! Very long drawn out conversation, that we have had so many times before, in the car on the way home. Then she says she thinks I’m either lying or mistaken about her weight (and what weight she needs to be).

She hasn’t spoken like this for a while. I hope we aren’t going back.

@SoTiredNeedHoliday I self referred DD13 to CAMHS on 28 Nov 2020 but was not urge it was an ED then I thought her ocd was back and exercise was her new compulsion. The ED team rang me on the following Monday as I had said she was over exercising and controlling food a bit; after we talked we agree to,refer her back to,the normal CAMHS.
Then I heard nothing for over a week when CAMHS rang me to triage her. By this point I was sure it was an ED (denial left me when she freaked out about butter on her toast...)
Then I waited another week and finally rang the crisis team as she was so bad. They advised me I had an assessment appointment on Thursday 7 Dec but the letter had not arrived with me! They advised setting up a weekly meal plan to,help,managed her anxiety,
We were assessed. The following Monday after a team meeting I had a call,form the original person I had spoken to,in the ED team to say we needed a professionals meeting that day as matters were serious and we needed to act to prevent hospitalisation.
We then had a meeting the next day with DD and the ED KW.
We struggled over Xmas and it was horrendous implementing the meal,and exercise plans. Our KW was responsive all over Xmas and arranged a face to face psychiatrist appointment on 5th Jan when we had olanzapine prescribed. Game changer.
Since then we have had weekly on line calls with KW and a meds review on line with psychiatrist yest. That’s it.
KW very responsive via what’s app,and email. I was running my meal and snack plans past her every week but now don’t need to. We have had her help with managing distress but my DD will not engage with her at all and today we agreed to suspend DDs involvement in the weekly meetings.
She is now 89.6% wfh and has gained nearly a stone since her lowest weight on Xmas eve at 5st 8lbs (that was a demoralising weigh in as I had been trying to up her cals but even at 2200 we were woefully under what she needs)
I do weigh ins blind every week and message her KW.
And ECG and bloods once via GP otherwise they are not involved. They are useless and haven’t even sent the results to the psychiatrist.....

myrtleWilson wow admitted, that must have been really hard.

I keep having moments thinking that DD isn't too bad and she just needs to eat a little more. However, now we're openly talking about it her views are really disturbing. She thinks no one eats about 1000 calories a day etc etc .... social media I think has a lot to do with her views.

I also think that having such a low BMI she just can't accept the rational thinking her growing body can't survive on less than 1500 at a very minimum.

myrtleWilson when she was admitted was it based solely on her BMI or other factors too? It sounds like the help you have received has been really good.

exLtEveDallas I also hope you aren't going back, that would be a very difficult situation to cope with.

So many typos...sorry! Thurs 17th Dec for those bothered by timelines!

Lottsbiffandsmudge thank you for sharing. That is really helpful for me to hear. I am thinking I will call CAHMS tomorrow and talk with them.

Hi Needholiday - not admitted on BMI at all, her BMI was/is on low side of healthy. But Dd had undergone a significant starvation process and pre admittance for first time was probably on about 400 calories a day - so her reason for admittance was risk of re-feeding syndrome.

We've been through three re-feeding syndrome episodes in total now. She restricts, we restore under guidance, she restricts, we restore under guidance and so we go on... The problem is each cycle, the restoration gets harder. To her credit she has maintained at 1800 per day for two months now - the most she's been able to do in over a year, but the emotional and mental distress it is causing her is awful.

We are getting lots of support but DD is a long way off even contemplating recovery and is in significant daily distress and actual delusions (she believed at one point that calories could be absorbed through the skin). ED can be a truly horrific disease - most people who are ill want to get better, a parent supporting a child who doesn't want to get better is caught in constant switching of offering unconditional love, setting boundaries, being a verbal or physical punchbag - you/we are often in conflict with the ED and it can be heartbreaking when you see your child choose the ED. Thankfully on this and our first thread we have had posters who had ED's in the past as children come on and reassure us that even in their worst times they still loved their parents - that hope and the kind support on this thread gives me a boost to keep on keeping on when things can feel very bleak and challenging.

I raised concern so many times but was always fobbed off. In the summer the GP referred to paediatrics and CAMHS. Paediatrics saw us and were reassured that she'd been referred to CAMHS. CAMHS did an assess and discharge (while we were in the assessment room for the Paediatrician), deciding that she was low in mood, but who could blame her - coronavirus. Eating down as a result of feeling down. They were reassured that Paediatrics were involved. So both discharged and left us with 3 monthly dietician advice.

Over the next 6 months, the dietician emailed all the paediatricians and got no response. She then did an urgent referral to Paediatrics - no response.

Eventually, DD1 was complaining of being dizzy on standing. After venting here and everyone telling me I needed to get DD1 seen, I put a sats probe on her finger and measured her lying and standing heart rate. Then I phoned the GP and said 'I'm just phoning for advice. Her HR is 144 when she stands....is that ok?' We were sent to A&E and then kept in for 9 days, moving from a 1000 calorie plan to a 1500 calorie plan.

A week last Thursday DD1 had her first CAMHS appointment and was prescribed fluoxetine. Then, last Tuesday, DD1 had her first official weigh in. 700g loss and threatened readmission. Instead, they increased the plan to 2000 calories.

2000 calories is hard. DD1 was sick last Tuesday after evening snack. She was sick again today after having Fortijuice because she refused lunch. We see the psychiatrist again on Thursday.

Just a thought Lougle but do you think the fluoxetine could be making your dd nauseous? I took it a few years back and had hideous nausea with it 😕

I really don't know @Girliefriendlikespuppies. I thought I was doing the right thing by being firm and telling her she needed to have the Fortijuice, but then she puked it all up. Distressing for us both.

I hate that I'm thinking about the lost calories, not just her being unwell.