Advice…Teenager low weight/starved brain

[Littledancer13]

Hi,
DD is 13.5years. 5ft (152.5cm) and weighs 36.5kg.
She has Functional Neurological Disorder (FND) which presents itself in the form of constant nausea, pain in legs and dizziness. This was well managed until a few months ago. She also has a huge fear of being sick which is effecting her day to day life, she is so scared of being sick, if someone in school is sick she can’t attend school for days incase she gets sick, because she constantly feels nauseous due to FND there is a vicious circle of anxiety which makes the nausea worse.

She had an appointment with her FND doctor and she had lost 1kg since her last appointment 5weeks ago. She is scared to eat too much incase it makes her sick, she only eats limited certain foods and they are in very small portions. The foods are food that won’t give her food poisoning … so small bowl of plain pasta, less than half a normal pizza. Does like snacks that are ‘crap’ biscuits/chocolates etc. She has always been a fussy eater.

The doctor said she is underweight and the reason she can’t get out this awful bout of anxiety is that her brain has gone into ‘danger mode’ because her fuel tank is so depleted. He said as a starting point he has prescribed a minimum of 2-3 fortisip drinks a day on top of meals and snacks. She can’t tolerate them!! She gags at the first sip, we are trying different flavours and brands and have also tried protein bars, again a no go. Her diet is so limited it’s not easy to add calories, she doesn’t eat potatoes other than chips so can’t add butter and cream etc.

I just don’t know what to do! Has anyone had anything similar? He said this is the first step to try… what could happen next?? I have 4 weeks before I have to send an updated weight. She will continue with therapy for anxiety around sickness.
It's all a vicious circle.

Admission for in patient is not solely based on bmi, there will be many factors around, physical, mental heath, family life, outpatient services available etc that will all be considered.
Will DD eat any of the high end ice creams? I’m thinking Hagen Daz or Ben and Jerry’s? They are good for high calorie with low volume. Can also be added to milkshakes.
Basically the calories need to go in one way or another. At this point you don’t need to worry about what the food is, put aside any ideas of what is or isn’t healthy and go with anything she will eat.
If admitted to an ed unit she would be on three meals and three snacks a day, once cleared the initial refeeding period.

It’s ludicrous to talk about dangerously low weight without blood tests and ECG, etc

you need to push for this to be done urgently

The raspberry fortifresh and the blackcurrant fortisips aren’t too bad, and I’d agree about much better chilled
Calogen just tastes a bit chalky and you could probably add it to anything that you’d put milk in
Good luck!
She will feel better once she’s got a bit of weight on, starvation addles your brain

As a word of caution I would be wary about adding anything to safe foods. We lost a few with DS because he could tell they were different, he also lost some trust in foods in general as he didn’t know if they had been changed.

If adding things I would make sure she is fully aware and part of the discussions.

its hard with ARFID because a safe food can quickly become unsafe

From a different perspective- medication to address the anxiety- mirtazapine is an antidepressant that works particularly well for anxiety and increases appetite as a side effect.

Is she actually feeling nauseous because of FND? Or is she feeling nauseous because of anxiety/emetephobia.

The problem is if she's already got it in her head the fortisips make her sick, its unlikely she will be able to drink any without gagging, because most likely the gagging is psychological. I also agree that I wouldnt mess with her safe foods as a change in taste/texture might make her gag or feel sick and that safe food is no more. Does she like mayonaise? You could create different dips for her pizza/chips and pasta that dont involve messing with the safe food in the first place.

An FND specialist is not a weight/eating disorder specialist. I would go to her GP about her weight, get an ECG and bloods sorted. She needs management for anxiety/emetephobia. Shes needs to acknowledge her nausea is likely psychosomatic, and accept the fact that she might be sick and that can only be done with therapy

Don't wait four weeks. Tell the doctor asap that she wont/ can't drink the fortisip.

Try buying very rich ice cream and making smoothies/ milk shakes from them, with added fruit, etc.

i’m really grateful to everyone, there is lots of good advice here.

Today - we are going ice cream shopping together. She is up for a trip to the shops to chose high calorie snacks and a trip to Costa for a lemon muffin!

Tomorrow - I’m calling the GP, I want bloods and an ecg urgently and referral to ED clinic, although not sure if they will except her as it’s not a typical ED.

I just scared myself by looking at her previous centiles, although she just falls into the healthy category still we all know that doesn’t mean anything.

10yrs - 24th Centile
12yrs - 28th Centile
13yrs- 5th Centile
13rs 6months - 4th Centile

its only this past month that she has lost weight (1kg) She has always grown and put on weight when measured but clearly no where near enough.

It’s so worrying.

Sounds like a good solid plan for the next 24 hours OP. You need to be proactive and pushy but not go into full panic mode imo. It will be more constructive to take the next logical step(s) as you are planning to do.

There is urgency but it's not an emergency, I think. 1kg loss is absolutely not something to just dismiss, but it's 2lb. A 1-pint wee and an empty stomach can be 2lb.

Without pumping her for info and ruining your day together, think about some of the questions you might be asked - such as.does she have periods or have they stopped? Is she anxious about school or anything particular? Sitting next to each other (so grabbing the bar stools in Costa, or manufacturing a walk or longish drive) rather than opposite helps my teens open up.

Thinking of you both 😘

Glad to hear you’re going to push for these tests. They may well be fine, but if your doctor is talking “starvation mode” this needs to be checked.

A referral to mental health services is also indicated

God luck, it all sounds very stressful

Hi OP,

I'm going to caveat this by saying I am not a doctor, but I am sadly something of an emetophobia expert with a teen DC who is very severely affected.

My experience is that emet is very, very poorly understood and treated by the NHS and CAHMS and general private practice. It may present like an ED, but the mechanisms driving it are very specific and require specialist treatment, not a generic AFRID/ED treatment plan.

Is your DD showing any actual signs of starvation brain? Although it clearly needs to be addressed, I wonder if the doctor was unhelpfully alarmist? My DC is slightly older, and is below your DD on the weight centile (under 2%), despite being above the 50% centile for height. When I spoke to the GP recently they weren't overly concerned about her weight specifically - there was certainly no discussion about fortification.

Sounds like she needs some psychological support to help with her anxiety about eating. Check whether the FND specialist or the GP can refer to a health psychologist, or whether she would meet the criteria for your area CAMHS service

Plain pasta and pizza can give you food poisoning. Any food can.

Obviously don't tell her that if it's all she'll eat.

She needs some kind of therapy to make her realize that normal portions sizes of food will not make her sick. And she needs to increase it quite slowly. I hope there is something like this she can engage with?

You could warn her about the dangers of osteoporosis. How girls and women in their teens and 20s can have the bone density of an average 90 year old. If they have unhealthily low BMI. That they could break their hip or back just from tripping on the pavement while walking slowly.

There is a type of fortisip that is shot. My mum has them as she couldn't manage the drinks, either.
I'll check what they are called when I visit tomorrow.
Sorry if you've tried all this but I'd try;
Making your own smoothies/ice cream with full fat milk/yoghurt/ice cream. Using her preferred fruit/flavours.
You can also add Protein powder to these.
Pasta - cheese on top.
Pizza - extra cheese on top.
Hot chocolate drinks with sugar and whipped cream on top.
Add a nice coffee shop cake/pastry?
Any drinks she likes? Full sugar everything!
Would she tolerate something like a glucose drink (like lucosade?)
I think its about adding fat/protein/sugar at this stage.
Agree about getting bloods done in case she's anaemic (I'm not sure encouraging supplements is a good idea as this could encourage less eating and more supplementation)
Good luck x

Calogen Extra Shots Strawberry 6x40ml | Direct Care https://share.google/332yGtOBOUMUachSw
These are only 40 ml.
The fortisip compact are 125 I think .

I was a bit worried about DD going down this path a while back. You are clearly in a very different place and it's been a huge journey and I totally get that giving her things like "clean" foods won't help, but I have spent quite a lot of time with DD talking about how to assess food safety or explaining HOW food goes off etc in quite a sciencey kind of way. So we talked about proper storage, how bacteria breeds, what kills it off etc. She can still be a bit iffy if she thinks something hasn't been stored correctly but it has helped. I do 100% get though that you are way past that point, but is it something to consider - like a food science course or something - as an addition to other things?

Re food - I would 100% second that if she likes smoothies, either make your own or supplement bought ones. Avocado and greek yoghurt are great ways to add a bit of extra nutrition and calories at the same time, also a few oats and seeds. If it gets too thick, top up with a little apple or orange juice. I have done this for DD in the past when she was starting to get a little focused on one or two things that she would eat without the variety she needed.

They are called calogen extra shots. Can be mixed with yoghurt etc

Oops cross post! 😊

i thought that too - ie about starved brain being unscientific.

but then google tells me this:

” Potential Clinical Interpretations
When a patient experiences concurrent severe low weight and intense anxiety, medical professionals typically consider a few distinct possibilities for how the two are linked:

• Starvation-Induced Hyperarousal: The anxiety is a direct secondary symptom of malnutrition. When the brain is starved of glucose and essential nutrients, its regulatory networks malfunction, locking the nervous system into a chronic fight-or-flight response.
• An Underlying Primary Anxiety Disorder: An existing, severe anxiety or panic disorder may be the primary driver, causing such intense nausea, gastrointestinal distress, or appetite suppression that the individual becomes severely underweight as a consequence.
• An Eating Disorder: A condition like anorexia nervosa or Avoidant/Restrictive Food Intake Disorder (ARFID) may be present, where intense anxiety and severe energy restriction reinforce one another in a cyclical, bidirectional loop”

I have to say the 4th centile doesn’t sound too bad, especially if her healthy centile was in the 20s (due to height, build etc).

Many years ago one of my babies was on the 0.4th centile due to reflux and, although it was worrying, no one ever suggested admission, and he just eventually got over it due to enriched milk, H+ inhibitors and growing up.

I really doubt she has reached the point of ‘starvation brain’, and it sounds like you are working really hard now to turn it around. Of course, still get all the tests, and monitor closely, but I wouldn’t overly stress just yet.

@Badvocthebad and @limetrees32 Thank you so much! Definitely going to give these a try, much less liquid. She is really put off the amount of liquid with the others so these may be the winning ticket! Thank you so much!

@MyrtlethePurpleTurtle thank you for taking the time to Google and post, I’m trying so hard not to Google things but the info you have posted literally sums up my DD’s life at the moment and it’s a vicious circle.

Called GP, they said they don’t have an appointment until a telephone appointment on 27th November!!! And they won’t prescribe the fortisips until then let alone consider bloods etc. I’m so annoyed!

I’m not too worried about the drinks as I am buying a selection of high protein high calorie shakes and bars and they have all been rejected as disgusting anyway so I doubt the prescribed ones would be any different.

I’m going to email the consultant but who knows if they will reply to that before I have to send in her weight at the end of the month.

She was sent home again from school today because she felt unwell and then the anxiety spiralled. She only managed 3/5 days in the week before half term. Urgh!

Ensure does juice drinks which are marginally better than the milkshake style ones according to Dd there’s several different flavours strawberry, lemon and lime and possibly orange