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.

It Doesn’t seem that she has any role in this, and perhaps it is time for her to start to manage her own health a bit.

If the messaging changes from accepting the picky-eater talk to “Yes, I understand, nonetheless you need to find foods, which can be home made which you are happy to eat, so that your health can improve. So rather than focusing on what you can’t do, we are only going to talk about what you can.” What would happen?

Those drinks come in other fortified versions too...juices are much nicer but yoghurt, pudding and soups for example. Small volume but high calories and nutrients

@Goingincirclesstill Pudding type thing might work, thanks! I’m gong to google now!

Does she tolerate liquids? Clear whey protein is more like a squash or juice. Myprotein do individual sachets of different flavours which may be worth a try.

Otherwise you could try making something like flapjacks, protein balls or protein pancakes. Have a look at recipes for eg marathon training.... small amounts of high calorie dense foods that can be eaten on the go.

I can see this post is meant with the best intentions, but it’s not usually a good idea to unduly reassure people that the thing they fear won’t happen. It’s hard to articulate, and I’m not saying that you shouldn’t reassure them that the thing they fear is unlikely to happen but the more powerful strategy (IMO and IME) is to get them to understand that the Bad Thing might happen but that they will be able to cope with it and here are the strategies if it happens and you are there to support and help them through it.

This develops resilience and tools to cope.

If OP goes on about how clean things are so her DD won’t get sick and then by really unfortunate coincidence she does get a vomiting bug then there could then be another set of issues around trust etc.

I hope that makes sense.

Definitely sounds like ARFIDS. There is a good Facebook group you can join for support and ideas. I don’t know why they wouldn’t have agreed that was a likely diagnosis. She hits a lot of the criteria.

Could she have Ehlers Danlos syndrome, or another connective tissue disorder? And autism? Look up the researcher Jessica Eccles (Bendybrain). Having EDS triggers anxiety since the brain doesn’t know where the body is in space. It would cause those symptoms as well as GI ones too. And it’s often co morbid with autism which may be behind ARFID. I’m making a lot of assumptions here so sorry if this post is way off the mark.

Does she have/will the doctor prescribe anti emetics? Then she has something there if she feels poorly as a safety net, so she can eat more. It might psychologically help. Does she eat the vitamin gummies also, just so you know she’s getting some vitamins. Has she tried the anti nausea wristbands? There are some great anti nausea breathing meditations you can follow also, if she will try.

I’d probably start with some baking recipes, like avocado brownies with ground almond flour if she tolerates sweet dry textures. Crosta Mollica pizzas are good quality and not too processed, add extra grated mozzarella. Would macdonalds style milkshake work, using good quality ice cream like Duchy Organic or Yeo Valley https://topsecretrecipes.com/mcdonalds-shakes-copycat-recipe.html

If she will eat some pasta, maybe try the Northern Pasta Co pasta or the high protein pasta made from pea flour in Waitrose (green box). They both taste great (my kids love them) but have 20 grams of protein per portion

I would be wary of her being prescribed medication that she does not need. By all means, if a doctor considers them a useful back up to support mental health then ignore me. But if she is not actually being sick then why would she need anti-sickness meds?

As per my post just above I do appreciate the best intentions but be careful of developing other problems if unnecessary, unhelpful or unsustainable crutches are introduced.

It’s scientifically established that starvation has psychological impacts like increased anxiety, rigid thinking etc. I’ve put a link below, but you could just google the Minnesota Starvation Experiment

https://psychiatry.duke.edu/blog/starvation-experiment

OP This is the sort of weight that would trigger significant concern (possibly inpatient admission) in eating disorder services. At the very least has her doctor ordered an ECG to check her heart? Starvation can cause heart damage as the muscle is eaten by the starving body.

@Kielyflower I came here to say the same thing. Starting a regime of her own cookware/pans to keep”safe” seems ok. Until in 6 months time when that regime has expanded and expanded to only certain utensils, plates and so on. Sometimes doing what works now sets up a chain. Like OCD, the more reassurance is given, the more is sought.

There are some really good therapies available for emetophobia and anxiety disorder. I think in your shoes that’s what I’d be pushing for, OP.

@january1244 I had no idea that pasta existed, I will go get some today! Worth a try!
Yes has wristbands and anti sickness tablets from doctor but she then became hyper focused on them, and couldn’t eat/function without them. So have steered away from them. Have also used a placebo tablet.

She takes a multivitamin gummy everyday.

I’m also going to push the ARFID and see if we can get some help.

I don’t think her weight is low enough for a hospital admission, but I feel terrible for thinking that if she was taken in for a short while we could get her out of this danger mode and then reset.

I’m really grateful for all your help and ideas. Thank you.

I use Protein powder from The Organic Protein Company - the cookies & cream one takes like gorgeous hot chocolate & you can use it for baking, smoothies, milkshakes, overnight oats etc. They also do a vanilla and an unflavoured one too - I use in baking too, replacing up to half the flour.

If you can add milled flax seed to stuff you've got the Omegas benefit too. I put it into brownies, cakes, pancakes and cookies

My daughter had various health issues, and as a result is underweight and struggles with food.
She will tolerate the fortisips but only the strawberry. They also do juice ones which might be worth a go.
She finds fruit smoothies good, and the supermarket chocolate milk shakes, which are in cartons with the fresh milk and absolutely full of calories.

Gold standard treatment for vomit phobia is CBT. If you can afford it, look for a CBT practitioner near you who is registered with the BABCP. If you can't afford it, back to the GP for a referral to CAMHS. At the figures reported in your OP, your dd's BMI is 15.6 - just over the upper limit for admittance to an eating disorder unit - so definitely need to look at treatment within the community first. Good luck with the high calorie food/drinks.

This sounds really difficult

Is she receiving treatment for anxiety? If not then this would be the way to go as this is now in eating disorder territory

The root of the issue needs to be tackled, and quickly, if she’s continuing to lose weight

Did the doctor do bloods? How were they?

Is the anxiety about being sick, or being sick in front of people/outside the home? I have a bit of the latter and I find just carrying a sick bag (plastic with like a pad inside, they sell them online) in a bag or pocket is enough for me to think that if I was caught short and suddenly felt violently sick then it'd be ok.

as an aside, the NHS calculator for children puts her (just) in the healthy weight category, if that helps!

They do it in centiles for children rather than bmi

But urgent help for her mental health is needed. As pp said, CBT is good but seek professional help

The posters suggesting hospital admission don't understand the thresholds for this.

I think push whatever she feels safe eating. Cooking/baking with her might help her feel safer eating it. There is a fortijuice which people find less gross. She might like a daily trip to Starbucks, or making her own smoothies/milkshakes etc. Drinkable calories might be easier for a short while.

Have you considered that she might have autism? Emetophobia has a big overlap with autism and autistic girls can present more subtlety. Obviously knowing wouldn't be a fix but it would help in knowing how to help her.

I would try and find 3 meals and some snacks that she could add to her safe foods and I wouldn't worry roo much about the nutritional value.

Would she have pancakes for breakfast? Or a homemade smoothie (I would add oats as the texture will do weird but you could full day Greek yogurt, honey etc)

For lunch chips with chicken nuggets (M&S chicken munchies are nice). Will she eat a sandwich?!if she likes mayo you could add that on as a dip.

She could have the same for dinner or even have pancakes again if she likes them

@GettingFestiveNow The hospital team are arranging CBT but if it doesn’t look to happen soon then we will go private. But they did say that we need to get her out of danger mode before therapy would work.

Do you know what the BMI for eating disorder inpatient care is?

she is still eating her normal foods and snacks but that isn’t enough to get her out of this vicious circle.

I’m so sorry, yes you definitely don’t want it to be a new obsession. It’s so tough. I have something that has made me nauseous since childhood, and the developed emetaphobia. Like the PP, weirdly carrying a small plastic bag around helps. I also have a very small stash of anti nausea tablets that I keep with me for long flights or business trips - just having them there available makes me feel better.

For me CBT didn’t work. But lemon water or mint cuts through the nausea feeling. Ginger capsules from Solgar really help (they also help gastric emptying so reduce the nausea feeling). But it’s so hard when you feel nauseous a lot anyway

@Littledancer13 athere is some well meaning advice on here but please tread carefully in going forwards

Has she had any form of bloods, ecg etc due to low weight. I think she should be being monitored closely by a doctor and maybe a paediatrician? Referal to a dietician? Mental health?I think you need more support as i don’t think you are going to solve this yourself.

Inpatient care is often first a childrens ward. Inpatient units are few and far between. Obviously the NHS is a location lottery and different services vary between NHS trusts. Privately more may be available.

What @Ladyoftheflowers26 said about actual medical assessment of effects of low weight on her physiology is what you need to know about

It sounds like ARFID not ‘fussy eating’. Our NHS board has no ARFID service so we are paying a specialist OT ( a vast rate) to support our child. There is also anti anxiety med which can help kids with restrictive appetites to increase appetite though you need a child psychiatrist to prescribe this and our child did not meet the threshold. Some anti-histimes work to increase appetite in some children.
(ARFID is avoidant restrictive food intake disorder. It’s an eating disorder).
Biirminghan food refusal service are a private service who can diagnosis from online sessions.