Teen Eating Disorders Thread 4

[SoTiredNeedHoliday]

Starting a new thread, no 3 is full

DD current wfh is a fraction under 82% and we’ve been told it has to be 85 before she can return to school and even then it will be on a part time basis.

We’ve also got a new meal plan which ups the calories quite significantly… wish us luck! 🤦🏼‍♀️

Morning All. Sorry that we have had so many new joiners recently, you're very welcome here, it just makes me so sad we are all going through this.
We've had a pretty good summer, DD(17) has been much more her old self since WR in June. We even had a two week foreign holiday which was an absolute delight. Would never have believed that could happen even back in June. Only a few MH issues / wrinkles around over eating while away, largely offset by some swimming. However, since we've been back we too are in Relapse territory. Sorry to hear you are too @myrtleWilson . The fear of year 13 and uni applications is really triggering. Think the weekly therapist is helping and the CBTE kicking in now (it was weeks in assessment mode rather than CBT).
Fingers crossed a few uni town visits over next couple of weeks trips this into excitement away from fear.
To everyone on the Restoration journey , we had a terrible 3-4 months with in patient stays a very real possibility and thought we had lost DD. She did come back. She's still a little broken and it took quite a long time. I just kept reminding myself then (and since holiday) that nothing matters except the next mouthful. It helped me to not stress out about missed calories and mess up the next snack/meal. It's hard for anyone outside of this hell to understand how much our kids recovery is all down to the parents. But it's all on us, whether with support from cahms or not.

Hi quick sign on as I'm feeling depressed!!

Just got off zoom call with the ED psychiatrist, dds now 97% wfh (down from 99%) which is due to her growing a cm. She is suggesting trying olanzipine as the next step, what doses are everyone's kids taking? She said it would be 5mg for dd in order for it to be effective 😕

Can't believe we'll be going into another September with this shit still going on 😢

Hi there @Girliefriendlikespuppies . I'm also feeling down about September and another school year.
I'm surprised they are suggesting olanzapine. For us it was used at lowest wfh point and I couldn't wait to get her off that onto setraline. I may be wrong but I think setraline and other anti depressants are more usual for someone at or about WR. Olanzapine just spaced DD out and made her sleepy.
Might be just our experience though ..

Olanzapine made DD1 very sleepy for the first two weeks or so. She started at 2mg BD, then cut to 1mg recently. Tried to cut to 0.5mg but it all went badly, so now we're on 0.5mg in the morning and 1mg at night.

I'm also surprised that they're thinking of olanzapine at this stage, tbh. DD1 was put on it as a last ditch attempt to avoid an NG tube, when she was 38kg. She's now 97% and the psychiatrist wants her off it as soon as possible. She's also on fluoxetine which is likely to continue for some time.

The Dr did mention fluoxetine but I'm really reluctant to consider an antidepressant for two reasons; one I took fluoxetine myself a few years ago and had horrific side effects which took a long time to recover from and two dd doesn't often seem very depressed. Today for example she's been chatty and laughing at a comedy film we were watching. She does have down days but generally her mood can be lifted by doing something she enjoys.

I don't know, the Dr said 'she's treading water' which is true I suppose. She also said the ED is becoming entrenched 😕

It's a difficult decision. DD1 started really slowly and even now she's only on 4mls (8mgs) per day.

Hi all quick check in…
Met psychiatrist by myself today as she wanted a full back history from pregnancy onwards! We are seeing her again next Weds. she’s great and v engaged.
Is sorting a bone scan and referral to gynaecologist for lack of periods starting. She hinted she thinks DDs weigh my still be too low.
She has written to gp for bloods for poss bone issues and hormones. Got to fight GP to extract blood forms for hospital.
She is talking about using sertraline for DDs OCD type thoughts and taking both that an olanzapine before trying to stop olanzapine.
She also mentioned that we could get an autism assessment. I feel like the kitchen sink is being chucked at us.
Not complaining tbh but it is all a bit overwhelming. Our KW was talking about discharge on Monday and psychiatrist is suggesting CBT therapy.
She has grown 3.5cm but not really gained so I am a bit panicky. She is also starting to cut back a bit and get defensive when I challenge her. I think I need to take a bit of control back tbh. I just can’t face it,lol.

@Girliefriendlikespuppies Dd on 5mg of olanzapine.

Don’t know where that lol came from - there is nothing funny about it…..

@lougle I have just taken her blood pressure - we have to go to hospital for bloods as she's so young. BP on sitting today is 89/72 and standing 113/75so I have emailed the practice to ask what to do as this seems low to me.

Our therapist has said she can't work with her if she loses weight two weeks in a row. Which is fair enough. So if that happens there is no option but hospital and the dreaded CAMHS.

She ate well yesterday but couldn't finish her miniscule pudding at the end of the day and let it dribble out of her mouth.

Then today it wasn't great. And she's completely refused dinner. Wouldn't come downstairs, lying on her bed kicking and screaming. I mean what do you do? Seriously, what do you do?

Our therapist has been amazing but I just can't see how you force someone to eat who won't. No amount of "compassionate encouragement" works.

The GP has triaged her and we have another reassessment at CAMHS next week, where I'm going to ask for medication.

I suppose at least my medication is kicking in and I'm no longer have panic attack after panic attack and I'm less suicidal.

What have you all done in the face of absolute refusal?

Tbh if she's refusing and the therapist said that it will mean hospital, that's prob the best option. DD only took things seriously once she'd been admitted.

Has anyone had experience of low blood sugars? DD is at a better weight than she has been in probably a year. She's so much healthier yet we've had to have bloods redone twice recently because the glucose levels were so low. I really don't understand it. The hospital are concerned she could have seizures but she says she feels fine.

@DarkBlueEyes that sitting blood pressure is a bit low, yes, but it's reassuring that it goes up when she stands up. They really worry when it drops on standing. Did you take her heart rate (pulse)? They worry if the heart rate jumps when they stand up. If it goes up 20-30 beats per minute on standing then it's concerning. Also, with the BP, did you retake it after a minute or two? Sometimes the BP initially rises, then drops.

BP is very fluid dependent, so even if they're eating relatively well, if they're not drinking well the BP will suffer.

I'm glad your meds are helping a bit.

@NCTDN do you know how low they're going? I think our kids don't have good reserves, so eating regularly is really important. DD1 is 97% WFH but her blood sugar dropped to 3.3 at 7 hours after a meal in A&E. It's really hard, but if you can get something like orange juice and a cracker in, then that will stabilise the blood sugar.

They're going as low as 2. Something but no idea why. She's eating and drinking regularly.

Thank you Myrtle.

We sought a private psychiatrist referral way back in December when she had the initial period of reduced appetite (along with other things) and had to wait until May for a first appointment.

The reduced eating has only happened over the holidays, so quickly, but we are now hoping to use her allocated psychiatrist to help with the eating too.

I have made an appointment for her with the GP after we return from holiday and I guess we will go from there re CAMHS etc.

I feel a bit of a fraud on here tbh because she has not actually been diagnosed with anorexia. In fact, today, she has eaten a meal out with her dad, a macdonalds and a fajita for tea! It's like a complete turnaround from the last few weeks. It messes with my head tbh!

Anyway, there is no way I could convince her to not go to Reading. She is SO excited and has been planning it for ages. I have got to hope she stays safe and her best friend looks out for her as best she can.

NC is there any chance she could be purging?

Dark glad you're feeling a bit better, I think when faced with full refusal your choices are;

Keep going - I've heard stories of some parents sitting next to their child with food for 16 hours 😳 (I couldn't do that personally!!)

Offer an alternative, ideally something of similar calorie value.

Threaten and if needed take them to A&E

Lots blimey that does sound really thorough, I think my dd has taken a step back because of growing as well. It's amazing the difference a few kgs makes. I know what you mean about taking back control again, it's bloody relentless and so knackering. I'm looking forward to the schools going back for a break!!

@Girliefriendlikespuppies definitely not purging. I've found an article which seems to explain things - copied the main point below:

The second scenario that is low glucose levels after meals in those who have started regular eating may at first glance seem odd but can be explained as follows: - carbohydrate is taken in as a meal and this is broken down into glucose. The pancreas releases insulin, which helps cells to take up and use glucose but this in turn, lowers blood sugar levels. The liver tries to respond to the low levels of glucose by releasing stored glucose but because stores are low the liver is not able to make the necessary correction. An episode of hypoglycaemia can occur up to 2 hours after eating.

I used to get 'postprandial dip' which was exactly as NCTDN describes, when I was in my twenties and was low BMI for no particular reason - it was only when I'd had my children and my weight went up a bit that it stopped.

I'm feeling a bit anxious about DD1's ASD assessment next week. I'm sure it will be ok, and in my head I know she has ASD, but if they didn't see it, that will be unhelpful for college placement.

Hi everyone - hope you don't mind me joining the thread. My DD (13) was diagnosed with Anorexia in May - we have been in re-feeding hell ever since but she's has made good progress with a 9kg gain. Needless to say quite a lot of my crockery broken in the process as well as my sanity! But we are slowly getting there.

Her Psychiatrist is saying she is only 85% WFH but am really confused by that number as the WFH app recommended on here has her nearer 98% (and also if you use the median method it's 98). Does anyone know why there may be a discrepancy? Apparently they have used charts adjusted for ethnicity (white British) and I know that they haven't looked at her historic growth charts. Her BMI is only 19 which I understand needs to be up in the 20s.

Hi @EdwardTheBlueEngine 9kg sounds like really good progress!

We've had a small gain this week, like half a kg, but I'm happy it's in the right direction. It's been a loooong week between getting DD to eat and my Ds who is a bottomless pit when it comes to food! I'm quite sick of thinking about food.

@EdwardTheBlueEngine welcome to the thread. If you want to PM me the D.O.B, weight, height, etc., I could double check on my app, but there shouldn't be a difference. Could they have reversed a figure in the height or weight? 45 Vs 54 kg would give very different WFH figures, for example.

I've just had a quick play with the app and I reckon at her age (I've used 13.5 years), 85-98% is about 5-6kg difference, depending on height. So it's a significant variance.