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.

They take away the nausea (which she is feeling constantly from her medical condition) and this is enough short term to get through the danger zone of having lost too much weight and trying to re establish eating. CBT etc all takes time, whereas food and expanding the diet is desperately needs now

Its so hard isnt it? I worked with quite a number of children with extreme eating issues when I was sendco. The issue for the parents was that they became hyper focused on finding foods the teenager would eat. Cahms didn't seem that good at supporting in this area as the NHS seemed to compartmentalise and the kids were seen by diet and nutrition specialists, and not very often.
I hope some of these suggestions work for your daughter. Interestingly kids I worked with could all eat McDonald's products. Makes sense when you consider how much money they spend making sure their food tastes great.
I think you would be wise to look into private access to CBT for your daughter, clearly the root of this problem is mental health.

OP I just wanted to reiterate this very good advice. It’s not just about weight, it’s about how her body is coping. I don’t want to scare you, but children can look and act physically OK, until suddenly they’re not.

Scared of being sick but eats chicken... Unusual. If she eats vegetarian food she's far less likely to get food poisoning. Maybe try lots of the things people eat for a dodgy tummy - rice, toast, bananas, apple purée.

My daughter has a very limited diet and we recently tried Paediasure Teen Balance which is available in Boots. It's essentially a protein shake fortified with vitamins and minerals. I think it says to mix with with water but we mix with milk for extra calories (and it tastes better) and she really likes the chocolate and vanilla flavours. The only drawback is it's quite expensive and the tin doesn't last that long but it's really helping my daughter get the extra nutrition she needs. Might be worth a try?

Has she tried medication for reflux? It is possible to have silent reflux that makes you very nauseous but without the obvious heartburn type symptoms.
DD eats much better on medication. ( hEDS and autism) and if she forgets it the nausea returns.

One of my DCs had almost constant nausea and was given medication. This helped a lot. I think part of the help was also psychological. They knew they had the meds there if they felt nauseous.

For calories, a Chocolate Fridge Cake is very good. A lot of calories in a small portion. I have a simple recipe with butter, chocolate, honey, biscuits and raisins. Adding cream to coffee or hot chocolate can help. Dressing foods with good quality olive oil adds calories too - not just salads, over pasta, casseroles, etc.

Making your own smoothies is a great idea too. There are recipes online aimed at older people with small appetites that have lots of calories.

Someone above mentioned chia seeds, but I found they can cause digestive discomfort, which affects appetite, so I’d avoid personally.

I'm very sorry to hear about your DD, OP.

Based on our own (awful and ongoing, sadly) experience, I think AFRID is a red herring here. It's the emetophobia that is driving the restricted food intake. I can very much sympathise with the awful cycle of low weight, poor physical health, increased nausea, and anxiety. We've been battling with it for 5 years now and it feels impossible to break.

The milk based Fortesips need to be really cold to be drinkable. Once they are room temp they are horrible. Have you tried them very cold, and through a straw? DS has had them over the years and can only tolerate the vanilla or the apple from the juice range.
Try and get 1 or 2 into her, as they are nutrtionally complete and will protect her heart and brain better.
Id also look for a referral to eating disorders. They'll have significantly more experience and can help you DC understand the impacts of not eating. Has she had an ecg?

Edit to add I assume you know to do 6 small meals a day, and let her eat while distracted? Sneaking any food in is where you are now, its very challenging.

sounds like emetophobia is what’s causing her eating difficulties more than ARFID and her limited food choices is a way to lessen her anxiety around the fear of being sick. I’m glad she’s in therapy already for this. Would she consider anti anxiety medication to see if they would help.

Some great advice on this thread but please ignore this. Why take away an entire food group that she's happy to eat when she's already restricted? Also, vegetarian food is often less calorific. And animal fat will really help with the starved brain.

The food poisoning worry is due to distorted thinking so any advice to remove foods on the basis of it would be wrong

Would she be able to take Omega-3 fish oil capsules to help her brain? Eggs are great for brains due to the choline and B vitamins.
Had you thought of making the Fortisip into ice lollies?

Have you thought of checking for coeliac disease. That can leave you feeling sickly. My son had it and took ages to get diagnosed. We eliminated it from the diet as the test came back fine (but is unreliable anyway) after eliminating it the GP asked him to go back on it to retest. He wouldn’t touch the stuff. I knew he had it but son was completely in denial. Once we had done this and started the new diet, it was like he had a food phobia. He is still very restrictive with his diet (he is an adult now) and can get very anxious about it. It also made him very sickly. Coeliac disease can manifest in so many ways. Also try a good probiotic. A lot of any illness starts in the gut, the gut feeds the brain and if she isnt eating healthily or properly it is likely her microbiome is not in great shape, which can induce anxiety further. I just thought I would share my experience in case it resonates.

Have you got a ninja creami, my daughter was told by the dietician that if she found the drinks hard to stomach she could make ice cream out of them. I use ready made custard in mine.

cheese on her plain pasta?
Hot chocolate to drink?
Full fat Greek yogurt with chopped walnuts, banana and maple syrup?
Porridge made with whole milk and nut butter?

Hi OP

I don't know the current guidelines for admission for refeeding but I suspect your daughter is closer than you think.

It also sounds like you are dealing with multiple issues so trying to look at things holistically needs to be in the back of your mind (and can be difficult when dealing with NHS).

Your consultant is right whilst she is really low weight therapy won't work. Many moons ago I was admitted to a specialist eating disorder setting. Priority was refeeding weight and bloods were checked regularly for physical health and therapy was introduced slowly. For your child you may want in your head to think about the immediate and longer term needs almost like succession planning.

With respect to weight gain that sounds hard especially if you suspect ARFRID. Right now for more calories would be key if she can manage a happy meal it's a start same with snacks.

I remember the weight gain drinks for someone that dislikes milk and butter like I did they were hard going and sometimes impossible.

Don't accept the first ones prescribed as the only option there are lots of variations out there. I found certain flavours better than others there are also some more juice like ones although they are quite syrupy in texture at times.
Cold is key for all types in my opinion sometimes used to freeze mine and then eat them like ice cream/ sorbet.

Good luck and keep pushing for the right support. If your daughter has you looking out for her she already has a great ally

@gettingthroughtheday are you living through a similar situation? 5 years???

@Gonk123 yes she has been tested and we tried reflux meds too.

@OrganisedOnTheSurface thank you, it’s so hard. I just want to do the best I can to help her xx

It does sound a lot like arfid. it can be very tricky because for a lot with arfid the more they feel pressured to eat the more they will be unable to eat so it can become a vicious cycle.

we tried lots of drinks with DS and had some luck with the juice based ones but he couldn’t have enough to get the calories in he needs.

She hasn’t had bloods done since last year (it was very traumatic!) never had an ecg. At her appointment this week there was a consultant, physio and psychologist and no one mentioned bloods etc. They measured her height and weight, she was also wearing just leggings and a tshirt so she wasn’t hidden behind baggy clothes.

I would push for bloods so you know exactly what you’re dealing with. Ask about play therapists to help if needed they are amazing!

@Littledancer13 ,

‘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 really wouldn’t feel terrible about it. Eating disorders (of whatever form) are very insidious and hard to treat. You wouldn’t feel bad about her being an impatient if she had a physical ailment, you wouldn’t feel happy that she was in the right place. It is in no way a sign of failure, either in her part or yours.

I agree with others about pushing for a full blood panel and getting her heart thoroughly checked over (ecg at a min, but also echo ideally).

Yes, this. My DD who is nearly 13 weight 36.3kg at a shade over 5ft tall. It is on the 6th centile per NHS and within the 'healthy' range. But she is full of life, vitality and energy. Her hair and nails grow, she dances several times a week and wakes up refreshed. Don't let anyone tell you that there's an arbitrary cut of for support when your DD is so obviously struggling with her overall health. Wishing you both peace and luck