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

Hey all another terrible eve standing firm over exercise as DD wanted again to compensate for this time am in her opinion under intensive netball session in games. Full.on panic attack and violence against herself the house and us and then after I calmed her and got 4pm snack in her i had to leave to get my sons and she started running up and down the side alley. My DH heard luckily (working) and sorted her out again. Anyway she ate tea and late snack and we snuggled and watched Anne with an E on netflix but she couldn't get to sleep and is knackered this am. Wasnt sure I'd get her to school but I have after more firm but compassionate talking. She only has a gentle walk today as it's her rest day and I know it will all kick off again later. mine finish at noon today and so I am going to use these few hours to try to get myself turned round for that onslaught.
My eldest said today that he isnt feeling as hungry as usual. He is 17 and prob fully grown but he has OCD and anxiety issues too and so I am gently panicking. There is no way I could restrain him as I did my DD last eve as he is 6 ft 2 and 13 stone.... i had a quiet word and he said he wouldn't be getting and ED as he likes food too much....

@Lougle meant to say great letter!

@Lougle thnks thats really useful to know, I'm going to look into initiating the process myself then. Was led to believe school had to kick things off but if I can get the ball rolling until IP psych & SALT reports matetialise, that'd be a real positive. While DD is strughling so much with learning my fear is it's just going to feed her ED as self esteem is crushingly low.

@lotts youre hsving a b tough tome Lotts. I feel for you on this one. Violence / rage has to be the worst aspect of the ED..its incredibly challenging to deal with. We've hsd it alot over tge course of DDs - still do sometimes- and pronviples of NVR ( nom violent resistance) were suggssted/ talked about in our FT sessions. Might be worth looking into for tips on how to confront DD when she's going off on one. Full NVR courses are another thing but just getting familiar with its principles may be helpful??? Hang in there as you are, you're doing bloody well.

Excuse typos!

@Roolet12 part of the EHCP process will be gathering reports such as Ed Psych, so it will all tie together.

Thanks @Roolet12 I will certainly look that up. Picked Dd up at noon and so far so good meltdown wise. She is playing Xbox with her brother at the mo...

@lougle ok thnks.. she was assessed by a clinical psych at LH who's recommended further assessments with an ed psych. The SALT also diagnosed with a mixed expressive- receptive L.D so hoping together these 2 reports are enough to get us started while we wait, I imagine, a v long time for ed psych involvement.
Did your DD have a school/ county ed psych & if so was it a v long wait?

@lotts glad so far calmer....hope it lasts 🤞I know NVR may sound a bit full on as an approach but may be poss to glean useful elements from it?

@Roolet12 that's the beauty of the EHCP process - it has to be done to a timescale by law. Hampshire is a good LA re. SEN.

here is the hub link where you can request an EHCP assessment. Your DD deserves an assessment and you have documentation that says so.

Hi, I’ve not finished reading the full thread yet but I will do. I’m very worried about my son. He’s 13, weighs 40kg and is 163cm - the NHS BMI thing says this is 3rd percentile and a healthy weight.
He’s never been a big eater, which I think is due to his ASD - he doesn’t ever seem to be hungry. But lately he’s been refusing to even come to the dinner table at all and is not eating dinner most nights. He keeps saying he doesn’t like eating but he doesn’t know why. Today he said he doesn’t like eating because he doesn’t like the feeling of food inside him. I’m really worried.

Hi @NelleBee I can understand why you're worried. He's actually quite underweight for his height. You should really contact the GP. Is he eating breakfast and lunch? How about snacks? He needs 3 meals and 3 snacks per day, ideally.

During lockdown when he was at home all day he was not eating breakfast, then he would sometimes lunch or an afternoon snack (not both) then he would eat some amount of dinner. Since going back to school three weeks ago he hasn’t eaten a single dinner but he eats breakfast at my mums before school, presumably he eats lunch at school, then he has a snack at my mums after school.
He’s been referred to a paediatrician at the hospital because he keeps getting a fast heart rate - one time over 200. We haven’t actually physically seen the paediatrician yet but did have 24 hour ecg. He has a CAMHS paediatrician too, so I’m going to talk to her in two weeks.

Hi @NelleBee so sorry you have had to come on here and I can understand your worries. I have just had a check on the BMI nhs page and assuming he is a July birthday 2007 ie 13.5 yes old he is actually coming out as underweight.
I think I would be finding out if he is actually eating lunch at school (have you broken up now?) because if not he is eating v little.
I have 2 sons and it was about 13 that they started eating like horses as puberty kicked in and their cal requirement increased dramatically.
I think I would be going to the GP or asking to see his paediatrician early. I don’t think it can wait 2 weeks. Has he lost weight during lockdown? Rapid weight loss is also a red flag as is serious restricting for whatever reason.
Any ED team will just ask you to start feeding him 3 meals and 3 snacks a day and so you might want to try that anyway. There is lots of help on the Eva Musby website about getting them to eat. My DD does not have ASD but I read a lot on the ESDUK face book group from parents whose kids do and there are obviously other considerations so you might get some specific help or directed to helpful websites there- you just have to ask to join and answer a few questions.
I have found it a lifeline as well as getting advice and sharing tips on this page.

Hi everyone,
Sorry I've not been around - am feeling very much done in. DD is still doing all she can but the AN is still really strong and I've hit a bit of a wall..
Will read back and catch up - love you to you all!

Sorry EDSUK face book

@lougle thnks alot for the link! My next misson....

@NelleBee I'd echo the others and probably push for an earlier appt to flag up your worries. You mention a CAMHS CAMHS paed which is great so you're already in the system so to speak. Can you contact him/ her adap for advice?

@myrtleWilson hope youre ok myrtle. Look after yourself.

@Lottsbiffandsmudge did the peace last?? I hope so....

P.s

@Lougle don't suppose you happen to know or have heard about waiting times for EHCP's do you? I was told possibly 9 mths by a SENCO at LH.......

@Roolet12 the timescale is statutory. The requirements were relaxed early on in the pandemic, but that relaxation has been removed and they must now stick to time.

That means that they have 6 weeks from the moment you file your request to decide and communicate that decision to you whether they will assess.

Then they have a further 10 weeks to assess, make a draft plan and return it to you. (Week 16)

Then they have to issue the final plan (Week 20).

That's it. They have to stick to that timescale. It's law.

NelleBee welcome although sorry you've had to find us. Your ds eating pattern sounds similar to my dds (also ASD) when she was in full restriction mode 😕 I echo what pp say and I'd speak to the GP about your concerns. In some areas you can self refer to the Camhs ED team so might be worth checking.

With Easter coming up it might be a good time to really keep an eye on what foods going in and start pushing him to eat more.

Myrtle 💐

I've got a bit of a dilemma over the evening dog walk, the rule is if it's a short 20 min walk dd can come along, if it's a longer walk she can come along but has to have a snack. The evening walk generally is a short one and it's normally a nice time to talk to dd who tells me about school etc.

However if like today it needed to be longer dd just refuses as won't have the snack 😕 I know in theory I'm right to insist but it seems such a shame to miss possibly the only time with dd when she'll actually talk to me!!

Ugh.

We watched a lovely film tonight called Blinded by the Light on Netflix, we both enjoyed it and there was absolutely nothing triggering in it!!

@myrtleWilson sorry to hear things are tough
@Roolet12 it did sort of! We did her gentle rest day walk and I let her come with her brothers to some local cricket nets to bowl a few balls (all low energy stuff). She ate a huge tea and actually seemed to enjoy it but then was trying to get out of her eve smoothie after looking in her mirror during her stretching routine saying she had a headache and felt sick. I made her eat it anyway.... I felt mean but I was not giving into what was poss an ED ploy. She hasn’t been sick and she went out like a light when she went to bed. I think she was just knackered from 2 disturbed night...
@Girliefriendlikespuppies I hear your dilemma about the walk.it is so hard not to be able to just go out for a gentle stroll without worrying about cals. Esp as it’s still all we can really do and the weather is so nice. As a family during lockdown 1 we walked together most days and really connected. This time we can’t do that as DD can’t come along so sad....

Hi all have been trying to keep up with a lot of your stories.

Myrtle- really hoping you’re still managing to push on even though things are tricky.

Nellebee- had to post as your story sounded a lot like ours. Ds 16 is being assessed for ASC. The racing heart was a thing in the run up prior to diagnosis. My dd got fitted with a tracker by the paed for a couple of days. Was kind of inconclusive but now I think could have been due to periods of starvation. Have to admit I found the Eva Musby book annoying as so much doesn’t fit for my ASC child.

Dd has restricted down to bare minimum that keeps her out of hospital. Tried ditching her breakfast but we gave her a bit of control to get that back on track. Literally eating an identical menu every day down to same Graze bar flavour:-1x toast,1/2 hummus wrap, 2 Alpros,1 vegan dessert and 1 Graze bar.I’m scared as can see her getting sick of some of it and then it will be hello hospital again and it’s GCSEs. Just want to limp through to May but cognitively think she’s being impacted. It’s heartbreaking to see. She looks so vulnerable. Think they’re worried about water intake so will up that.

Had a late session with FT last night. Kind of peeling away the layers with him. Think he is starting to understand us and his other commitments will lessen in a couple of weeks so he can go to meetings again. Was a tearful meeting as we have a lot of other stresses and dh is starting to struggle.He reassured about a couple of things and we talked about olanzapine at our request. It seems so vague. DD’s IT was removed. We feel she needs IT to access FT. AO said MDT said they have no plan up their sleeves. Really don’t know what they expect as it’s not working and a 5th admission would surely show that. Nobody thinks IP would be a good idea.It had only been asked in last meeting if we had thought of olanzapine. No other suggestion other than picnics with AO so they can give her a space to open up ie IT lite to replace the IT they took away.FT said they think long and hard before prescribing it. So we said are you suggesting it?He said it’s for us to think about. So we said but you’re expecting us to decide on it as non professionals without thinking long and hard about it as we aren’t as well informed as professionals. Anyway made some headway and hoping to talk to psychiatrist with a load of questions this week with a view to potentially trying it over the Easter holiday. She is supposed to be revising then so not sure how that will pan out. I asked about therapy support whilst on it abd he said it would be him I think. No idea how CAMHs think 1 worker can cope with a struggling family, AN support, giving dd IT to access the FT as she struggles with it, helping unpick the AN/ASC thoughts, helping DD understand her emotions, understand and cope with an ASC diagnosis and the also the results of being on olanzapine. it’s nuts.

Re the EHCP would my dd get it? She’s diagnosed with dyspraxia, hyper mobility and sensory issues. Currently being diagnosed with ASC which has caused MH issues recently and has been hospitalised 4 times since September with long periods off school. Although she’s bright and at a grammar the AN( and ASC)fall out has impacted what she is capable of hugely.

She might do, @Scr1bblyGum. It basically comes down to whether the school have the resources to meet her needs in the final assessment, but the bar for getting that assessment is actually quite low, so it's worth trying.

Thanks everyone. I shall have to find out what he’s eating at school - I assume they would tell me if he wasn’t as he has an EHCP and attends a special school. He started there in Y8 after only managing 6 weeks of Y7 mainstream.

He did see a dietitian at CAMHS a couple of years ago as he wasn’t eating properly. They weren’t much help as they just said to keep food in the house he likes and offer him that. Which we did do but then the dietitian left and we never got another appointment. I feel like it’s worse now as it’s not just him saying I only wants X food, he doesn’t want to eat full stop.

His CAMHS doctor wants him to have medication for anxiety and low mood but the hospital paediatrician wants to do all the tests on his heart first.

@Scr1bblyGum sounds like a lot of things coming into play and all v confusing for us as parents when the support feels limited. By IT do you mean individual therapy? If so, I agree - 1 KW at CAMHS offering little bits here & there is a far cry from meaningful, individual therapy. Have you considered finding a reputable psychologist privately who has experience with EDs and ideally ASC as well? We are considering this for our DD because past exp has taught us that provision for this is woefully under resourced via Camhs.

@NelleBee I hope you are seriously listened to when you express your latest concerns re DS's recent eating difficulties. At least it sounds like you have a paed who's on the case....and as you say, school shld be able to tell you if DS has been struggling with lunches. ( you'd hope they wld have by now if it were an issue..). Good luck on both fronts.

@Lougle really helpful info again, thanks so much. Seems I was slightly misinformed then re timescale!... ...positive to know it has to be assessed within a more reasonable time frame.
Do you think it's wise for me to spk to school to check they're happy with me starting the process? ( dont want to get their backs up)

@Lotts glad things let up a bit yest eve and well done for standing your ground on the smoothie.

@Roolet12 I'm not sure I would inform the school first, for a couple of reasons:

1. What will you do if they say 'oh no, you have to try x,y,z first for 6 months and then if it doesn't work we'll try a,b,c, then we'll think about it'? You will be forced into either accepting the delay or saying 'nah, I'm doing it anyway.'
2. The school will have to give information about all the interventions they've tried as part of the assessment process anyway.

All the time it's informal, they can string you along with empty promises. Once it is formally a request to assess, you're on to a winner: either the LA will say 'yes' or they'll say 'Well school should have been putting the following measures in place, so no.' Either way, your DD gets more provision.