Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Welcome mog although sorry you've had to find us!! Your dd def sounds like she's in the grips of it I'm sorry to say. My dd also started off similarly, wanting to eat healthier foods and upping the exercise. It's scary how quickly it takes hold 😕

I would speak to her gp today and ask for a referral to the Camhs Ed team, the gp should also do baseline obs such as bp, pulse, ecg and bloods.

Anything below 85% wfh is normally stopping school and stopping all exercise time. Periods stopping is also a massive red flag.

We are just back from weight check, dd has gained another kg and is now 57kgs!! I'm pleased but also anxious as mentally she really doesn't seem that much better ☹️ in fact the ocd is worse!! Lougle I'm so sorry to be a pain but could you work out her wfh for me again please 😬 I'm guessing 97% ish?

TBH CAMHS had no issue with DD being at school on 80% WFH (though no PE until 85%) so I think it's not a hard and fast rule.

I realise that it's not the weight or even the WFH that's the important bit, but the intake and the attitude. So my DD looks so much better now, at 43kg, taking in lots of calories than she did at 43kg when she losing weight. Her period stopped when she was a much higher weight because it was when she started restricting (to 1500 calories I think). Once we upped the calories her period came back in 7 weeks.

@Girliefriendlikespuppies as long as she's still the same height as when you last PMd me, then 98.12%

@Valleyofthedollymix I agree with you re. Weight Vs state. DD1's periods came back when she was around 38kg, because we were refeeding. It's definitely the restriction that causes the problems rather than the weight itself.

That’s really interesting to hear about periods returning because of the refeeding rather than the weight gain.

I went in to DD at school for lunch but because of Year 11 assessments they were at capacity so there wasn’t anywhere quiet we could go. So DD came out to me and I drove somewhere and we had lunch in the car. It was awful. DD was crying and shaking and inconsolable. Then she had to pull herself together and go back in to lessons. My heart broke for her. This is so damned hard!! DD keeps saying why can’t she just give up. 😱😨

I think I know the answer ...but has anyone managed this without gp or CAHMS? Only because after going through the autism process with them, I'm not entirely confident that they won't do more damage than good.

Mog I think your dd def needs to see a Dr to get her baseline obs checked, I hadn't been too worried about my dds physical health as she was still eating one decent meal a day and it turned out her heart was massively struggling 😱

Whether or not you can do FBT without Camhs is very much dependent on your dd id say. My dd would have absolutely not paid any attention to anything I said but because all the professionals were saying it she did listen.

There is a useful fb group EDSUK which a few of us have joined and they give the outlines of FBT on there. The premise is that you take full control of all your dds food choices and she has to eat what you give her. You will get a massive kick back as the ED fights for control but you remain calm (in theory) and empathetic but firm.

To get started you will probably need to take dd out of school and get signed off work for a few weeks....

Thanks Lougle I can't quite believe she's 98% wfh, surely I should see some improvements in her thought process soon?!!

What's FBT?

Family based therapy NC its the main treatment for kids with ED. As I said the concept is the parent/s take over full control of all meals and snacks (3 meals and 3 snacks a day aiming for minimum 2500 -3500 calories per day). It has a very good success rate, something like 90% recovery after 6-12 months.

Eva Musbys book is good for getting your head round the do's and don'ts.

Thanks Girlie that makes sense.

So I've got her to eat a bit more today, and she's upped the exercise videos.

I just so tired from years of dealing with autism. And now this. And I know I will just have to get on with it, but I'm devastated.

Do I go to gp myself first, or do I talk to her first and take her with me?

I think CAMHS is hit and miss. I've done quite well because the psychiatrist reviewed her at the hospital 2 days after discharge, to assess her. She decided that DD1 was having a 'depressive episode' so we have seen the psychiatrist weekly initially, then two-weekly since discharge (apart from a blip in the beginning when she had Covid).

The psychiatrist has been very helpful. DD1 was putting on weight at a snail's pace and I got to the stage where I said 'give her an NG tube.' The paeds consultant agreed that it was reasonable and said 'just go and talk it through with the psychiatrist tomorrow.' She said that she could understand it, but wanted to try one more thing first - olanzapine. It turned the situation around immediately and DD1 is now 10% off full weight restoration.

@Girliefriendlikespuppies I don't know about this magical leap in cognition, tbh. Although DD1 does have a LD, so perhaps we shouldn't expect the same results. We had a school review today, where DD1 was super negative, told the teacher that she hates school and when she sees the sign she just thinks 'Turn around and take me home!' They've decided that she needs to stay on her current timetable (just one or two lessons each day, no break times, no lunch times, no PE). The good thing is that they now think she has ASD and they now realise that she's complex, so they are really keen to get a specialist college place lined up for her - she's in year 10, so they have a year to get it right.

On that note!!!! I've just found out that my LA have decided that parents can contribute to special college transport. Because we are rural, our contribution will be £1300 per year!! She can't take public transport (unsafe and no direct route anyway).

@Mogtheanxiouscat

So I've got her to eat a bit more today, and she's upped the exercise videos.

I just so tired from years of dealing with autism. And now this. And I know I will just have to get on with it, but I'm devastated.

Do I go to gp myself first, or do I talk to her first and take her with me?

@Mogtheanxiouscat I would do an e-consult if your GP surgery allows it - that way you can write down all the issues and the GP can phone you to discuss before seeing DD. If not, I'd go to the GP first yourself.

Do you happen to have a blood pressure machine or a sats probe at home? It would be really useful to know what her heart rate is doing, especially if this is quite a recent restriction with ramping up the exercise.

Oh and I completely get you with the strain of SN behind the ED. DD1 is 15 now. 12 years we've been 'in the system' and now this. It's just so draining and, dare I say it, boring.

Has anyone's child managed to get through this without medication? Dd is adamant she doesn't want it.

NC we've managed without meds but it's been hard and I'm still not 100% sure if it was the right decision tbh. Also my dd only ever got as low as 90% wfh so not as severe as some.

Mog I know exactly what you mean, my dd has also been on the ASC diagnosis pathway for two years, although they've now decided dd is borderline ASC 🙄 so no actual diagnosis. It has felt like one thing after another all her life tbh, she's also had hearing issues, severe ear and throat infections (ended up in itu with one a few years ago), sensory processing difficulties, difficulties with bullying and managing friendships. The kid never seems to catch a break and I'm absolutely knackered trying to manage it all (I'm a single parent.)

Lougle that is disgusting re the cost of the transport, I'd be writing to your MP.

Hey everyone. Hope you are all well - I’ve not been on for a few weeks.
I’m worried about DS, he’s not doing good at all. I’m not sure what the problem is but he’s not himself, he’s refusing school - says it’s too much. And he has lost 2kg. He keep saying he feels sick, I’m wondering if it’s the iron tablets. Not sure how to help him.

Lougle your LA's transport policy is unlawful. If you want to, and have the energy, you can challenge it. SENTAS can help with transport appeals.

@EDNC

Lougle your LA's transport policy is unlawful. If you want to, and have the energy, you can challenge it. SENTAS can help with transport appeals.

Is it @EDNC? They say that post 16 is discretionary only, so they will provide transport for kids with SN, but there's a sliding scale contribution based on distance.

@Lougle and @Girliefriendlikespuppies it's relentless the add pressure.

So I just had the chat with DD. Letting her know that we know and that weight loss can't continue. Lots of tears and some denials, but I feel like the first step has been taken.

Thanks for all your help today on this thread.

Well done @Mogtheanxiouscat Lifting the lid is the first step.

@Mogtheanxiouscat your DD sounds similar to my DS. He’s 13 (and a half) 165cm and 40.3kg. And he’s also autistic with PDA profile.

I’m so exhausted keep trying to get the weight on - he had gained then just like that we are back where we started.

@NCTDN

Has anyone's child managed to get through this without medication? Dd is adamant she doesn't want it.

DD doesn’t have any medication but it’s still very early days for us with this being our 3rd week after discharge from hospital. I don’t even know how we’d go about getting medication as DD hasn’t seen any doctors or psychiatrists since she left hospital. Sometimes I think it would help DD as the ED voice is very loud for her.

@Mogtheanxiouscat ahh that’s good. Perhaps DD will feel a sense of relief that you know about it now. So will you speak to your GP about it?

Lougle any such blanket policy is unlawful. There's no automatic entitlement to transport in the same way as there is for eligible compulsory school aged pupils, but the LA's decisions must be reasonable and take into account all relevant information. They must consider individual circumstances - in your case, DD's needs, rural nature, family circumstances (especially if you have a low income), distance to college. Even if you aren't successful in securing free transport you may be able to get it cheaper.

Hi all....not been on much but I have been lurking and reading all your posts.
This group has been so supportive for me and I know @Mogtheanxiouscat I am sure you will find it helpful too. You have had excellent advice so far and my DD doesn’t have any other diagnosis (except OCD) so I am sure others will be better placed to help you through this. But I agree that FBT is the way to go and also thoroughly recommend the EDSUK face book group and also BEAT. And read as much as you can and get clued up!
@NelleBee sorry to hear about your son. How quickly has he lost that weight? A big weight loss in a short time might mean a trip to A&E would be sensible esp with his other symptoms.
So today my DD hit 100% wfh.... drum roll please! After another 600g gain. So now we are def in phase 2 and I am cutting her cals by c 500 a day to keep her at this level of weight.
I cannot believe we have got here. Merely 4 months ago we were at our lowest ebb at 77% wfh with the threat of tube feeding and hospital.
I am so proud of DD but feel strangely nervous about ‘letting go’ of the reins. At least with gaining there is a need to get as many cals in as possible but now I have to try to balance the cals with her sport.... it feels hard tbh but we started today and will weight again in 2 weeks to see how we have done.
@Girliefriendlikespuppies my DDs mental state has only just improved. Prob from say 98% wfh. But for my DD that is way over where she would naturally be based on historic weight and height. A lot of peeps say push on to 110% plus and wait for state to improve. You will know when you get there. I think I can say now that Dd is at the right weight for her mental state now. But she want c 2kg ago!