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.

Edit to add it was the doctor that said about it being a starved brain which has gone into danger mode

I think the next thing would be admission into a specialist unit. She somehow needs to put on weight before any therapy can be effective.

It is an awful thing, but the specialist units are very good. It is funny, I don’t know anyone who can stomach those high fat bought drinks. I guess they must work for someone, but I’ve never met anyone.

You can make your own very high fat drinks with fruit, high fat milk, eggs etc depending on the person’s taste. Would that be worth a try?

The only fortis up I could tolerate were the fruit ones when they’d been in the fridge - might be worth trying

My daughter has the “naked” protein smoothies instead as part of her treatment for anorexia

I hadn’t thought of making my own, she likes shop bought smoothies (certain ones) I wonder if I could add oats or something. It’s so hard as it’s nothing to do with her appearance or calories so not a typical eating disorder. I didn’t think she would be deemed underweight enough for hospital admission, if that makes sense! But yes you are right until we ‘fill’ her reserves no therapy is going to help.

Would she drink full fat milk with Nesquik in?

I used the give that to my DC who was underweight

@ZoeyBartlett the cold definitely makes them better, we are going through all the flavours!

@makemineadecaf I will go out tomorrow and get some! Thank you! I’ll try anything. Huel was an instant gag!

@Kielyflower Sadly not, although she can manage 3/4 of a small McDonald’s chocolate milkshake, but any more then make her feel sick and the anxiety escalates

My DD ended up at a similar weight to yours and also didn’t like the drinks. We did smoothies and shakes with jersey milk or full fat Greek yoghurt fruit, maple syrup, nut butters and unflavoured protein. Each meal had a small amount of avocado, nuts or peanut butter which she ate first. We added extra butter or cheese to meals like scrambled eggs or mash. Ie just used a lot of high calorie low volume additions to the plate also Porridge made with full fat and jersey milk or added a bit of cream. Hope this helps.

When ds was underweight I gave him a bowl of banana and custard after dinner everyday. 2 egg yolks and double cream. Would she have a smoothie with peanut butter in? Does she snack on nuts?

The doctor is probably right about the 'danger mode' - it's a known thing with starvation that a person then will not eat food even if it's available to them.

Does your daughter have ARFID? Always been a fussy eater, avoidant with fears around vomiting, small portions are all signs. If that sounds familiar then really you need an ARFID specialist who will have better ideas than "just add butter" or "just have fortisip" which isn't possible with ARFID.

If you look into ARFID and think it's a possibility then I would strongly recommend trying to get an appointment with Dr Liz Shea at Birmingham Food Refusal Services.

Im surprised at that weight he didnt recommend going to A+E for admittance for re feeding

The dietician can keep sending you samples of different things. My son had to add lemonade to make them palatable. Scandishake has a huge amount of calories (500 in a packet) and comes in different flavours, including chocolate if she can stomach some hot chocolate. Dont need to take the whole sachet in one go if too much. Also can add protein powders like.huel to home made brownies by substituting some flour for it. Getting anything in is the first step but also if you can get some vitamins in some form with iron in. Wellteen is a good one but if too hard to get down the dietician can arrange different types to try.

Hold on in there x

Anorexia is caused by weight loss, it’s not always about body image or wanting to be thin.

Your dd needs 3 meals and 3 snacks a day, focus on what you can add calories to. Double cream is great for extra calories and can be added to everything.

@RavenLaw I have often questioned ARFID but was dismissed by the dietitian. I think I’ll push for further investigation with her consultant.

If she likes the McDonald’s ones could you add ice creams to the protein shakes which might change the consistency and make it more tolerable (and fattening)

I've not read more than your first post OP.
Starved brain sounds very unscientific.
Anyway ,I do have experience of fortified drinks and agree they are very unpalatable.
When I was drinking them in hospital they used to make them with crushed ice ,like a " slushie " .
Having them v cold does help if your daughter could tolerate that .
They also used to make them into.jellies.
Other than that ..could you make up.your own fortified drink.?

You know they do Fortijuice as well as the milk based horrors ?
There are lots of suggestions on line for home made fortified drinks
9 Meal Replacement Shake Recipes for Weight Loss That Actually Feel Like Lunch https://share.google/2P7mv0VGNoAicdHLJ
Sorry that doesn't look ideal but includes ideas for adding protein powder etc .
Don't be put off from making your own .
I can understand why HP like the fortisip and similar stuff as it's a complete combination but it's no help if your daughter can't stomach them .
Any calories are going to be better than none at this stage .

Could you try adding things like chia seeds and flax to her food? Chia has a funny consistency but flax stirred into porridge/shakes etc. isnt so noticeable and would add nutrients.

If she will eat snacks like cookies would she eat homemade versions with added nutrients?

Cookies with oats, peanut butter and flax? Banana pancakes make with cottage cheese etc?

I didn’t think her weight was that low that it would need hospital admission @likelysuspect if you saw her in person she doesn’t look very thin/unwell. She has always been quite slender.

I’m just concerned about what happens next… what if I can’t get the drinks and calories in??

She did manage a chicken nugget happy meal last night, not the most nutritious but was grateful that she was able to eat all the chips and 4 nuggets and most of the small milkshake. But for most teenagers a happy meal wouldn’t touch the sides!

She is just the most lovely funny girl but is ruled by this fear of being sick. It’s taken over our lives. I need to get her brain out of danger mode ASAP.

Another thing you can try at home is bone broth/ chicken stock. It is very nutrient dense and I am sure you can persuade her with the help of a carefully selected youtube video or two that it is very 'clean'.
If you can get her on board with making it, understanding the process, maybe even buy her her own pressure cooker that is only for her and kept pristine etc etc big up the cleanliness, and how the long cooking means that there is no bacteria and so on, no risk of sickness.

If she can drink it as a soup great, 3 cups 3 times a day like medicine, but it can also then be added to all the other food she eats, so used to cook the pasta etc.

Best wishes and hope you find something to help your daughter.

@SENDmam The brownie idea is genius! She also loves baking so we could make them together and add chocolate frosting too!

Would she tolerate milkshakes ? When my mil drops weight, she has milkshakes and they help .

@Yogabearmous only McDonald’s ones! And then it’s a small one. But I’ll happily buy one everyday if it helps!

Hi this sounds like ARFIDS see if you can contact a charity like BEAT that might be able to support her. We have also been told to introduce the same foods but different shapes for example, potato waffles, smiley faces etc. and build upon the safe food. It is heavily linked to anxiety so getting that under control and stable is the key.