Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

No expert but

1. depending on when her birthday is she is at or below 1 centile. So of 100 girls her age only 1 with similar weight.
2. Although low BP can be normal, depends on where it's measured. Low BP at home is not the same as low BP at GP surgery (where you would expect a higher BP).
3. My DC follows CBT rather than FBT, but one of the first things is to "establish" 3 meals, 3 snacks, before concentrating on amount .
4. DC was already on that routine before her AN started, but started making herself vomit. Even when I became aware of this, watched her after meals, distracted her for an hour afterwards , she still continued with it and I could not tell when exactly she did it.

Sorry, that's to Notdonna

Thank you @Notagardener she has three meals a day but snacks are variable and definitely doesn’t drink enough. Rarely has pudding after a meal as always full. I’m going to push 3 meals and 3 snacks and work on puddings once 3+3 established. Think pudding introduction will be hard as we’ve never had puddings at home really or very rarely. I’ve read the hell you all go through (& your DCs) and want to us to be spared that! You’re all amazing at holding it together.

Notdonna, so every child is different but DC doesn't actually get in that many calories. She is I think roughly having 500 for meal and 300 for snack. And has been gaining 0.5 kg/week weight with this. But has stopped sport and purging (mostly)

Just an update thanks for reply’s about people not understanding. I don’t think my friend meant any harm I will take the advice of not talking about it to ppl that won’t understand. My dd is back to 100% wfh. This is after four weeks with chams she’s still having two huels a day so we are now going to remove one at lunch and try and get her to have proper bread and a yogurt instead. I’ve been picking her up for lunch each day. We are aiming for her to be able to eat at school sept when she starts secondary. There has been some social progress but she’s missed out on trips due to not being able to eat in front of others. So these things will be worked on but weight wise is ok now but I think mostly due to having 1000cals from huels. She has two snacks a day and actually asks for them now. I think chams allowed her to go a bit slowly with introducing things as she wasn’t too far from wfh and she’s stopped looking up calories everyday so there has been a lot of progress. Getting rid of the huels will be the big thing now so I am hoping we can get over that without too many tears. She was very upset at the suggestion but knew it was coming. The comments about getting it early is right I think we got it at an early stage and she is young so better able to keep an eye.

@NotDonna
Sounds like your GP doesn't know what they are talking about. My DD had to stop school when she dropped under 85%wfh. 78%wfh is very low and not normal at all.

Do you think her ADHD medication do impact her appetite? Is this something to discuss with cahms rather than GP?

I would definitely aim for snacks. We have 3 snacks in addition to meals and they are usually around 350 cals.

@Curlyhairedassasin yes, she was very brusque and not really interested. Quite condescending tbh. If there’s little or no improvement in next two weeks I’ll take her back (and maybe try to see a different one). Yes, methylphenidate (Ritalin) is notorious for reducing appetite so that was stopped 18 months ago and Guanficine started which doesn’t have that side effect. Her appetite has never been amazing and she’s VERY fussy - I’ve read about ARFID and there’s definitely similarities. But she’s got a reasonable range of foods and the ‘treatment’ is to slowly increase range, which I’m constantly attempting. The fussiness is around texture and looks - an adhd thing.
What are the 350kcal snacks please?

Do you wake up your DCs as I’m finding she’s sleeping later and later which then makes it hard to even fit in all the meals. Is sleepiness something you all see too? I don’t mean lethargy, I mean nodding off, needing afternoon naps etc? She’ll nod off in the car on the shortest of journeys. Like a baby/toddler.

@Threeyearsalready do you count the calories or just keep a food diary. I’m going to keep one incase I need to return to the GP. I wasn’t going to count cals as I don’t want that to prompt her into counting iyswim? But should I?
@Whippetlovely thats lovely news but I can totally understand the angst regarding stopping the Huels. Good luck!

NotDonna definitely ask to see another GP. It sounds like yours isn't very experienced with low weight/loss in preteens/teens which can quickly spiral into AN without intervention.

Things are still so stuck here. Dd is showing some very small positive signs on her medication (personal hygiene, going to bed at a decent time, a shopping trip with a friend) and luckily has had no side effects, but she won't talk about trying to do things to get better. If I try to talk she rolls her eyes and if I push it she walks away or says shut up. I can see this going on and on and on until she accepts some help. Selfishly, I'm utterly done with it all.

She has her camhs appointment on Tuesday next week but is saying she's not going again. I emailed yesterday and had quite a terse rely saying she must come to the appointment. As if it's that easy. Does anyone have any experience of what happens if they continue to miss their camhs appointments?

Notdonna, I don't think it is "healthy " to count calories, just "feeds" the obsession with eating etc. It is a rough guide in my own head. However I am aware that DC is looking...
Snacks can be 2 slices of toast with margarine or nutbutter (we have lots of different ones; peanut, almond, salty peanut etc). Yoghurt with granola, hot chocolate.

Yes to being tired. Common to be tired through low weight but also because of poor sleeping. Result is that she sometimes takes an afternoon nap. And yes to falling alseep in car.

@NotDonna
Snacks at ours are things like:

• a high calorie energy bar and a yoghurt

• Toast with butter and a banana * and a glass of FF milk

• Ice cream and a handful of nuts

stuff like that. DD has 3 x snack per day in addition to breakfast and lunch and dinner and is only gaining a few hundred gramm per week. We really need those.

@NotDonna we have a meal plan which has cals accounted for. I think it may be useful initially to count to get a good idea how much she is eating. You may be underestimating how much she actually has now. But I would do that away from her and not let her know you keep a tab

I meant overestimating

Notdonna the current meal plan sounds pretty low on calories tbh, if your dd has a small appetite every mouthful has to be really calorie laden. The only way to do that imo is to book everything in butter, lard and cream.

When I was getting dds weight up she had;

B. Large bowl of porridge made with double cream

S. Piece of cake/flapjack (ideally home made with plenty of butter) or croissants or pain au chocolate.

L. Scrambled eggs made with butter and double cream, two slices of thick bread, would also have a chocolate bar or more cake. Other lunches included home made soup (with double cream) with two slices of bread, tuna Mayo baguette with crisps.

S. Cereal bar

D. High calorie meals such as cheesy pasta bake, fish pie (white sauce made with double cream and butter) roast dinner with large Yorkshires, veggie burger with cheese/Mayo and chips.

S. We counted pudding as evening snack, this would be things like sponge pudding and custard, tiramisu, trifle, large portion of chocolate, cheesecake.

Dd also had a couple drinks such as milk and a smoothie throughout the day.

You have to totally reframe your thinking of what constitutes a healthy diet, for your dd a healthy diet is biscuits, crisps, cake, chocolate, chips etc as these are all a decent calorie amount. You can worry about addressing the balance and getting five a day in once she is weight restored.

The dr definitely doesn't know what they're talking about, under 80% wfh is usually strict bedrest and wheelchair use only.

Ha, I don't work for them but I do have a points card for Holland and Barrett 😁. The amount of nutbutter and high calorie drinks I have bought from them....

Update from us, exactly 3 weeks since DD was admitted. She hasn't gained any weight yet, despite being on chair rest. She's not aware of that but it's pretty disheartening for DH and I. She's sitting around 75% WFH. The mealplan has been steadily increasing which she's found hard. However she's trying, and the staff have been very creative in finding incentives, rewards and ways through it all. She's just phoned to tell me that yesterday she managed her full meal plan, 3 meals, 3 snacks, drinks, everything. I am so proud of her! I really hope this might start to translate into some weight gain. Is a slow start normal/to be expected? I'm just surprised she hasn't gained yet. She was running/pacing 10h a day at home. 3 weeks with virtually no movement at all, and 3 meals and 2 small snacks from day 1 now increased to 3 +3, and yet she now weighs less than she did when admitted. Does that sound typical?

@GrannyRoberts
No idea if that is typical but DD was for 3 weeks inpatient on a refeeding programme and despite the fact that the mealplan had increased steadily, she had only gained about 0.5kg by the time we went home. She was on a discharge plan of about 2000 cals. Do you know how much your DD is having now? My understanding is that they need in recovery a lot more calories to gain weight than someone who is not in such a calorie deficit. The food going in us used to repair organs, tissues etc. It took a long time for us (despite eating 3+3) to see a real weight gain. But I can talk oy about DD and do not know how typical our experience is but it sort of matches yours. DD was also on strict bestest and wheelchair only in hospital

DD lost even weight initially in hospital and we were told this is expected too.

@GrannyRoberts This is not unusual. The body may be in a state of hypermetabolism - having been starving for a long time, it will be using energy to 'switch on' things it had been switching off to do conserve energy - increasing body temperature etc. That's what I understand anyway. And fantastic news that your lovely daughter has managed 3+3. Huge congratulations!

@Curlyhairedassasin thank you that is helpful and does sound quite similar. The dietician has designed the plan at 2,500 cal but this may have to increase if weight gain doesn't follow. Now that she's actually taking the full plan I guess they will give it a few days then adjust as needed. It makes sense that the energy is being used for repair etc first too. She lost weight in the first week also. How long did it take for you to see consistent gain?

@NanFlanders thank you, so proud of her! I think she's just young enough that incentives (she's earned a trip to the local shoppong centre with the nursing staff) and praise from the nurses and us still carry some weight. And yes, you're right, her body temperature has increased, her bloods are now normal, her HR is better so all that energy is going somewhere!

@GrannyRoberts I cannot remember but it was a good 4-5 weeks I guess. She is on 2500 cals and gains about 0.5kg on that now. We have the odd week where her weight is only maintained but she is well over 90%wfh now and slowly and steadily gaining. It took a while and I remember being really upset about it!

@Curlyhairedassasin thank you, it's really helpful to hear your experience and does give me hope. That's great that your DD is consistently gaining 0.5. I know it's a really tough slog for you juggling it all though and I hope you are OK too.