Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Lyricat in my experience they do blind weigh if inpatients, my son knows his weekly weight as he's in for ARFID so he is able to know as it's not about weight loss for him but the other patients do not know their weights I believe.

Summer have meds been mentioned for your dd? Olanzipine is useful for some kids as it quietens the voice telling them not to eat. That's great she's done well on the ward. Can you take in her meals/snacks?

What an awful situation. I can empathise. We were in a similar place for two years. Not being in school (when your young person wants to be) is so destructive for their mental health.

They haven't got a clue about any of
Those when I mentioned it to them
I just want her home
Great idea on the snacks from
Home

Happy Mother’s Day to the most supportive, generous and inspiring of women. I hope you all have a good day 🌺

@Shanghai101 right back at you😍

Happy Mother's Day to everyone, especially to those going through very difficult times at the moment ❤️

We had planned to go to MIL for lunch. Dd has been very positive about it all week but couldn't go at the last minute as she's too worried about what food will be there and people commenting. So DH has gone alone because I don't want to leave her alone and upset.

This is just life now and we go with the flow. She's a million times better than she was on Mother's Day last year which I'm so thankful for.

Sending love to everyone ❤️

Happy Mother's Day to all the warrior mums on this thread. You are a bunch of the strongest, most resilient, fierce and determined mothers on the planet and I hope you all have a peaceful day full of fight free meals and snacks 😘

Just weighed DS and he’s lost more weight. He’s 7st 2lb. He was 7st 5lb on Monday at CAMHS and 7st 8lb on my scales 3 weeks ago. He’s now down to 75% wfh (45.4kg and 173cm tall)
I tried to take his BP and pulse - both were high but he was massively stressed at the time. I’m going to try again when he a bit calmer. His hands and feet are freezing and look mottled. I’ve told him he’s going to have to go onto a meal plan and eat 3 meals and 3 snacks a day and he got very agitated.

@WoodenTrain sorry to read your DS is struggling. Try to get him to lie down for half an hour and repeat obs. Does anyone else do BP at home? I’m wondering if I should get a paediatric cuff… also I’ve not had much joy eliciting normal parameters online.

We spent most of Friday night in A&E as DD had lost weight quickly and was lethargic with cold extremities. Apparently HR low but ECG was fine. Dr said “I don’t know what to do about it” and as her obs were ok they are re-referring to ED team.

Happy mother's Day to all wonderful mums on this thread xxx
@Glitterfarti Have you weighed your DD since the recent 3kg drop to see if anything is different?

Hi @lyriccat , no, that was on Friday and I got a telling off from the Triage Nurse for weighing her so often (it wasn’t me, it was the GP). I’ve already upset her today for reading through her Roblox chats and deleting the app due to the content of said chats. Don’t know what to do! There is literally no guidance or support.

Yeah, I’ve no idea what I should be doing. Should I call CAMHS again? GP? A&E? I feel out of my depth and I feel like we need urgent help. He’s lost so much so quickly if we wait for CAMHS he will lose even more.

@Glitterfarti I thought the same about a paediatric cuff. The BP cuff I have is clearly way too big for his tiny arm

Happy mother's day to all you incredible, strong and amazingly supportive women on this thread. I haven't posted in a while and just catching up on things but @WoodenTrain I just wanted to say, with the cold, mottled hands and feet. When my DD was around 75% WFH and this happened to her, CAMHS sent us immediately to A&E. She was admitted and kept in for 3 days for stabilisation. I'd be tempted to go to A&E if I were you, or at least call 111.

Wooden the only advice the ED service will give you is to implement family based treatment so you might as well start that now. He has to eat 3 meals and 3 snacks a day, given the recent weight loss I'd put him on bed/sofa rest.

All food related decisions are made by you, formulate a meal plan based on what you know he likes.

Be prepared for a huge backlash, I can not stress this enough - it is normal for them to scream, shout, try and run away, become violent. They are in full fight and flight mode as they've trained their brains to be terrified of food. Their brains will chuck all the negative emotions at them and you to avoid having to eat.

The only way through this is regular meals and snacks until the anxiety slowly reduces.

You have to be make all the decisions in their best interest as the ability of your ds to make any sort of rational decision has gone.

Lyriccat you mentioned your dd refused to be blind weighed, that decision should have been made by you in her best interest. My dd also refused to be blind weighed but I knew it was damaging so I made that decision for her.

Now dd is more well she accepts it was the right thing to do and now asks to be blind weighed at medical appointments.

@WoodenTrain can you take DS's temperature? DD was sitting at about 35C when admitted. Her pulse was also low (dropping below 40 when sleeping) and BP low too when resting.

I also second taking him to a&e my ED clinic said the same thing- the only thing is because her obs were fine I insisted on admitting her as I didn't feel safe to cope at home. She's now on day 10 and after a rollercoaster week and a half she's coming home very soon x

How is he now? I would honestly take him to a&e. Worst case they send you home
But after medical obs, bloods and ecg
Best case is they keep in him
Either way he's safer that way
Speaking from very recent experience my DD is still in after 10 days and I'm so glad I got her in
I was so worried she collapsing and home and I was so worried
Any questions happy to help

I must add we've had major frustrations at hospital but she's SAFE and STABLE hopefully home in a few days maybe tomorrow

He’s sleeping. He’s slept most of the day, managed to wake him up at about 6pm and he had a small plate of dinner (chicken, broccoli, potatoes) refused dessert then went back to bed. I don’t have a thermometer unfortunately. I’m thinking I should take the day off work tomorrow so I can get him to the GP or failing that A&E

@WoodenTrain , I would go to a&e. there is the Meeds checklist. ECG, bloods etc. A&e will have the results in a few hours and can admit if needed. I found a&e always more knowledgeable than the GP who wouldn't get bloods the same day done in any case. If he is sleeping a lot, it's a concern too.

I would by pass the GP and straight to a&e
They won't be able to do a ECG or bloods there which is what he needs as a minimum
Even if he's not admitted he will need that x

Also it's setting a stance of this is not ok and I want to help you
In our house where DD went on food strike and major food restrictions although I did go to a&e 6 times which was 2 admissions
(Lots and lots of encouragement from this thread and lovely people )it's telling her that's not ok and now she is on day 11 in hospital desperate to come
Home and comply with the meal plan
Something we weren't managing at home with the start of FBT
I'm hoping she just carry on but I sort of describe it as a re set
I must say from what you've described previously I would say like my DD that it's quite embedded and I would say a&e if I was in your shoes
X

@WoodenTrain

My DD16 is the same height as your DS.

I would take him to A&E.

DD was 44 kg when I took her to A&E in November 23, I was told she was at medium risk of death. They sent her home and CAMHS got involved.

Her weight dropped to 41kg, at this point she was fainting, freezing cold and we thought we were going to lose her. She was on complete bed rest for two months at home. My heating was on constantly as her temperature was 35. I had the ambulance out twice, she fell down the stairs and was unconscious, it’s been the scariest three months of our lives.

I asked the ED clinic to admit her to inpatient just before Xmas as she was refusing food and she was given a place at a day patient unit as an alternative to being sectioned, where she is now stable, vitals are done every day with weekly blood tests, medication and she is gaining weight each week. If they have any concerns at the day unit they would admit her immediately to in patient. I wouldn’t hesitate to take her to A&E if she was refusing food and fluids. She cannot afford to skip a single calorie. She has a psychiatrist, dietitian and nurse working with her and she attends the school sessions at the day unit.

They go downhill very quickly once the weight is so low. Once all the fat has been eaten up internally it attacks the vital organs to try and survive. DD has heart and liver damage and is fully aware of her health issues. Waiting for her bone density scan which will no doubt give her an osteoporosis diagnosis to add to the list.

Current wfh is 72…..it was was 68.

I wouldn’t bother with the GP, A&E is your fastest route to proper help.

Woodentrain if you haven’t already gone to A&E then please do, sleeping a lot is a concern. Sending you best wishes, it is terrifying but better be safe than sorry and the doctors we met at A&E were always understanding and advised erring on the side of caution as things go downhill very quickly.

I took him but he refused any observations/bloods and they said it’s his choice because he’s 16. He did let them weigh him and measure him. They measured him as 172.5cm and 46kg which is 76% wfh. They said they would refer him to CAMHS and that was that. Not sure where to go from here.