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.

Sorry @myrtleWilson I meant to write that earlier not later. My brain has gone.

@Valleyofthedollymix it's so hard on siblings isn't it?
Poor DS has just been left to get in on with things. I'll add that to my list of things I feel guilty about...

Valley - good meal support can make such a difference.. I think I've said before that parenting someone with an ED feels a bit like a surgeon has said *we need to operate on your child's leg. These are the tools we usually use (hand waft towards surgical implements on a trolley) see how you get on and I'll pop back next week to see how the leg is looking..."

@Valleyofthedollymix have you done the eva musby online workshop Get your child eating ? It is really worth it if you have had no guidance on meal support as yet. She has a bit on pricing so it is affordable to everyone (coupons etc). It's interactive and I found it really useful at the start of our journey.

Personally, I would go to A&E and ignore the teams advice to go to school, you're getting nowhere and delaying her recovery? Unless she will eat all 3x3 but she's already proven she won't. Once school stops that one big bargaining chip you lose.

Do you do weekly weights? Is she static or losing etc?

I agree with Sotired on the school front. This is your leverage to get your DD back eating 3 meals and 3 snacks. Anything less is not enough for her to be in school. I would take the view that if you don’t get this back established in the 4/5 weeks left of school term then you lose that opportunity if she’s still refusing come the summer holidays.

Yes that's what we've agreed - she has every last thing, no negotiation, on the plan or no school the next day. She is absolutely desperate to go. She missed her morning snack but had it at lunch time, along with the sushi and yoghurt, which is more than she's eaten in one sitting for a long time. This was with the meal support and the firm no-school without the catch up snack.

I'm really hoping that because she's done 2 meals and 2 snacks today, she'll do the supper and bedtime ones as she'll feel she's come so far that she won't want to 'waste' all she's done. And then a day of school tomorrow. Yay. And much toing and froing from us. And lunchtime support on Wednesday from our nurse.

So feeling a bit better thank you all.

She lost 0.5kg this week and 1kg the week before. So we really need to see a gain next Monday. She doesn't ever not eat at all - I'm guessing she always has at least 1500 calories, which means I suspect that A&E would find she's OK and wouldn't admit. But a threat anyway.

OMG @myrtleWilson that surgeon analogy is brilliant! I am shamelessly stealing that one.

I also asked the therapist if there was anywhere private we could use to supplement/complement the NHS service. We are fortunate to have the resources and what else is money for? So I've been in contact with this clinic to try to get some back-up - DH and my relationship has really suffered and this might help.

With regards the to-ing and fro-ing of you going up to school for both snack and lunch, could DD perhaps go somewhere quiet where she can FaceTime you? Or would you not trust her to do that? This is what my DD does at morning break for her snack and it works quite well.

Oh and finally, we took the decision to disregard what CAMH’s said about therapy not being helpful at this stage. We have sourced a private psychotherapist that DD sees every week. She specialises in ED’s in adolescents. I think DD is benefitting from it so far, she certainly seems far more engaged with her than she is with her care-coordinator. We’ve kept it quiet though as I know another family who had to stop this when their CAMH’s team found out and they said that they couldn’t do both.

@Rollergirl11 we are doing exactly the same. Got an appointment with an ED specialist dietitian on Friday - then a couple of weeks later seeing the psychiatrist to basically just tick the boxes so the health care company will pay! I've no idea of the reputation of the place though- only time will tell I suppose. It's wrong that private care is the way to get help.
Told dd she must not tell her care coordinator anything though.

Just popping in. DD1 hasn't been well, then her period started yesterday, too. She hasn't had her 2300 calories for a week now. 1200 at the worst and 1700 today, so a bit of an improvement. Psychiatrist on Wednesday. I'm a bit worried about her.

Lougle has she had her bloods checked recently?

Valley I'm so glad you're feeling a bit better, it's always good to have a plan! I couldn't agree more re being expected to just get on with it. I remember being told to go home and give dd 3 meals and 3 snacks like it would be the easiest thing in the world 🙄 I really feel like Camhs should warn parents that FBT comes with some pretty hefty side effects ie hearing voices, OCD, paranoia, aggression and suicidal ideation being just some of the ones dd has had to cope with.

Dds period started today as well which may explain in part her huge meltdown Ystd. She's been fine today.

Oh lougle hope she's turning a corner but completely get your worry..

Sorry to hear that @Lougle . Fingers crossed it's just a temporary poorly blip.

Interested to hear how private counselling is going. We have approval from my works healthcare for this but first one DD didn't really speak. I wonder if you could recommend a specific ED counsellor? The one we were using was a teen specialist but seemed out of depth with DD

A couple of weeks ago I read on here about hair loss. Dd seems to have a bare patch now and having read that hair loss seems to be later than everything else am worried she'll lose more. Does anyone know of good shampoos that might help?

Lougle ahh your poor DD, it does sound like she’s been poorly. Fingers crossed the lack of eating is purely down to being under the weather rather than anything else. Good she has got her period back though! And to Girlfriend DD too. 👍

@sm701 I think DD is benefitting from the private therapist. It’s giving her an outlet and someone to talk to that isn’t me. And her friends just don’t understand. At the moment they are talking about her perfectionism and I think DD actually finds it interesting. She has said to me that she doesn’t like the fact that the therapist is hearing all about DD’s imperfections and she doesn’t know any of the therapists. She says it’s unequal. I said that that’s what therapy is all about and why would you want to know the therapists fears and worries, it’s of not relevance to DD. But for DD it’s all tied in with showing weakness. DD commented that the therapist has a slight eye twitch so she’s taking that as her imperfection. 😂 I would recommend her but I don’t know what area you are in. We are in Surrey. I found her by looking at the Psychology Today website at their directory. A lot of people are fully booked and have long waiting lists.

@NCTDN yes it was DD that was experiencing hair loss. She is still losing a bit but it doesn’t seem to be as bad. I got her on Zinc and Biotin supplements and I have also bought her some shampoo and conditioner that is supposed to be really good for hair growth. It’s called Grow Me. Has lots of good reviews from people that have experienced hair Lisa through chemo that have seen good results. You can get from Amazon as well as the website directly.

www.watermanshair.com/hair/shampoo-conditioner.list

Thanks roller. Dd also has a lot of hair on her shoulders and back now but I'm unsure if she knows. I don't want to have to tell her and hope it will just disappear as her diet improves.

@Lougle is this her first period in a while?

DD1 is getting back to regular periods. This one is only a few days late (the last one was 5 days late). No bloods recently. I have emailed the psychiatrist but I don't find she gets back to me. We see her tomorrow though. She had a fall/faint (not sure which) after showering earlier and her blood pressure was 87 systolic, which probably accounts for it.

Dds periods a week early and the last one she had was a week late so not sure what's going on there. It's a bit like when she first started her periods and they were all over the shop.

I've got a case review with her psychiatrist and the CBT/autism team tomorrow 😕 really hoping they're not all going to start wanting to pull back.

hello, new to this. My DD is 14 and suffering from an Ed. This is rapidly turning into the worst nightmare. I can't believe it's actually happening and that my gorgeous girl is being taken over by this horrible illness. She is eating less than a quarter of each meal, no matter what it is, and no snacks or fruit during the school day. There is no way she is eating the correct amount. We are on the CAHMs merry-go-round - apt with gp, referral to CMs, rejection from CMs as not sufficient criterion being met, mental health issues and restrictive diet, apt with the GP, referral to CMs, rejection from CMs and so on and so on. We are getting precisely nowhere, meanwhile my child tells me she isn't hungry and please can I 'stop fussing' because she's fine, apparently. Am literally at my wits end. Please help!

@2Earlgreysplease I'm so sorry to hear this. I've relatively new to this thread compared to others on here, but they have all been so supportive and helpful.
Have you any idea how much she eats in one day on total?

I am so sorry you find yourself here @2Earlgreysplease . Im in middle of morning routines but just wanted to check where you are because if you are in certain areas you can self refer to ED clinics. For example. In south London you can self refer to the Maudsley via their website. This is what we did and bypassed GP and cahms.
You really need support and fast.
Check out the Eva musby and feast websites too.
Come here as much as you need for support- this has been a lifeline for me.
I felt utter despair for 5 months but we are turning a corner slowly. You need all the support you can get but you can beat this.

Hello @2Earlgreysplease, I echo what has been said - you'll find lots of support here and do push for a referral (or self-refer).

What's the criteria she's said to be not meeting?

What I've discovered is that it's not about weight so much as intake - DD's periods came back at a very low weight (far lower than when they stopped) because we were pushing the meal plan on her. So if they've told you her weight is insufficiently low, that's bs. It's what her weight is relative to what it would be were she not restricting food.

To give you an idea, DD's meal plan is:
cereal, 2 x toast with spreads, fruit
200cal snack
Sandwich or whatever for lunch, yoghurt
200 calorie snack
Evening meal with dessert
Glass of milk, 2 x toast with spreads.

That's for weight gain, but you'd only need to cut out two of the snacks to get a weight maintenance version.

The amount of food a 14 year old needs is crazy. All that stuff about boys with hollow legs and 'eating you out of house and home' applies to girls too but, well, sexism.

@2Earlgreysplease you've got some good tips there from the group. Just be careful on making her have the full program of food too fast as depending on what she's been eating there is something called 'refeeding syndrome''.

If you can share why you've been knocked back from camhs it might help in the advice given. Or even DD WFH or BMI.

There is a great online resource Anorexia family

There are some workshops which I found very helpful too Workshops Especially the first one about how to get DD to eat, its so thought but they explain methods that will "eventually" work

This is a great place to ask things, or just get your feelings across. I have to say this illness is the hardest thing I've coped with as a mother to DD

@2Earlgreysplease sorry you find yourself here. You may find that the best route in is to attend A&E. Then they will push you through to paeds for a physical assessment. They would then refer on to CAMHS eating disorder service. That's how we got through after months of yo-yoing with a dietician and GP.