Struggling with severely underweight child, no urgency from medics

My kid with severe food intolerances was diagnosed with osteopenia at 26 yo. Normal vit D and calcium previously and since, he had a dexa scan because our GP is very thorough.

I'm so sorry OP, I was a child that didn't gain weight and was overlooked as having an eating disorder because my weight was "stable". For me it was anorexia so not the same thing at all, after many many years I ended up in hospital for a year as an adult which could have prevented if it was treated earlier. I was on a medical ward for IV treatment at one point and there was a girl next to me who was clearly unwell she had ARFID but because it was ARFID she wasn't given access to level of support we had and I felt so upset for her parents who were pleading with the staff, like what do we do? That was over ten years ago and it doesn't sound like much has changed.

The fact that they aren't carrying out an ECG is shocking.

Did the consultant say the second paragraph or is that your addition? Just because high/low values can indicate serious issues doesn't mean that normal values show that everything is ok.

Similarly, if someone is screaming then clearly something is wrong. But if they're silent that doesn't mean they are ok - something might still be wrong.

No we’re not as you are completely wrong. My child was admitted countless times for urgent refeeding programmes after ok bloods. She was treated by a highly rated ED team. Often the consultant admitted her even before bloods as it was clear she was hugely ill.

Abnormal bloods ‘can indicate issues’, but the absences of abnormal bloods doesn’t mean an absence of issues.

I was told by the consultant treating my daughter that bloods were a “window in to the soul” and even the slightest dip or raise can indicate issues.

Where they are normal on every key measurement it is very unlikely anyone would be seriously malnourished

but we aren’t going to agree

all the best @DinosaurJuiceForEveryone

Absolute rubbish. My daughter was admitted to paeds for long periods of time several times with bloods coming back ok when battling anorexia .

Ten body is highly efficient at protecting itself. It will actively pull stored nutrients out of its own tissues, muscles, and bones to keep the levels floating in the bloodstream stable. Because of this compensatory mechanism, routine blood work (such as electrolyte panels, kidney function, and liver proteins like albumin) often remains perfectly normal even when a child is experiencing significant undernutrition. Studies show that even in severe cases of nutritional restriction, more than half of patients can present with normal lab values.

This really, really isn’t true.

OP didn’t say that complaint was submitted a month ago.

It really is that simple

It really isn’t.

If the bloods are normal and it was a full blood test - that doesn’t mean malnourished. It really is that simple. If it is a broad blood test incorporates all the key one - and they are all normal, the child isn’t malnourished

This isn’t true, unfortunately. It is really common for people with Eating Disorders to be extremely unwell and for their bloods not to show any abnormalities. The bloods are often rhe last thing to show it. At below 70%, he is very seriously unwell.

I would also take a lot of comfort from both his bloods being 👌 and the fact that within 4 weeks he has grown taller.

Two strong signs that even though he’s underweight - his body still has the energy and nutrition for him to grow. Added to which, if the bloods are normal that means he isn’t malnourished. The bloods are the very very first sign of malnourishment, as they will pick up even the slightest abnormality long before the first outward sign.

It was this complaint I was referring to -
just wondering whether you’d heard anything

I am an adult with ARFID.

If someone did that to one of my safe foods - firstly I would absolutely spot it, I am a supertaster, so there is no way you could hide even 10% liver in a burger patty - I would not only NEVER eat that food again but I would likely never eat any food you'd made me again.

Messing about with safe foods trying to hide things in them is a really great way to ruin trust and ruin a safe food - even with adults, so the effect that sort of deviousness would have on a child would be way worse.

@DinosaurJuiceForEveryone I wish I had useful info for you, I think your best bet is ringing consultant/secretaries and making a pain in the arse of yourself until they bump your kiddo up the list to get rid of you.

Ok
if his bloods are normal AND he’s growing - he’s a long away from being an emergency I suspect.

Anyway good luck with the complaint. Have you heard anything further in the month since you submitted?

I know you’re worried and rightfully so
but there is quite a bit to be comforted by

normal bloods (and bloods really are the gospel in most cases as to how someone is doing) and a growing boy… within 4 weeks no less.

I would see it as a positive. No nutrition. No growth. He’s growing. And you can at least hold on to that.

His bloods all still normal?

If he is growing taller - then that is a small positive because he wouldn’t be growing taller if he wasn’t getting some level of nutrition

My heart goes out to you, OP. This was DS2 (also autistic) for the first 8 years of his life.

Can you start by looking at what he will tolerate and seeing if you can disguise additional nutrients or calories in that. Ds would drink milk, so we added abidec vitamin drops to it, and splashes of cream - not enough for him to notice the change in taste but enough to increase calories.

He'd only ever eat two bites of anything then flat refuse, so my rule was the first two bites have to be calorie and nutrient dense. I did tiny postage stamp sized sandwiches of wholemeal bread with cream cheese instead of butter, peanut butter and jam. Cubes of chocolate cake made with almond flour not plain flour, butter, cream and extra eggs for protein.

I learned to offer a range of foods - never force anything, but explain what each type of food did: Protein makes you strong and is good for the brain (meats, cheese, fish, eggs) vitamins make you healthy and happy (fruit and veg) carbs give you energy to play, liquids keep your body and brain working properly. I'd ask him which from each frood group he liked, and then he could have whatever he chose, even if that was a chicken nugget, two mouthfuls of rice krispies and one carrot stick. But he'd sit up to table with us, even if all he'd eat was ice cream, so he got the social side of eating as a family.

He liked fast food and food packaged to appeal to children. Give in to this - at least it gets the calories into them. Sweets and crisps are better than nothing - ignore frowns from yummy mummies who have never dealt with ARFID. Once you know what he likes, you can start making your own healthy variants of it. He'd eat Mcdonald burgers so I started to make mini burgers and then sneaked pureed veg into them.

I used to sneak food into him while he was focused on Tv or a game. Basically everything that is a bad idea for fostering good eating habits in normal children, is a good idea with ARFID: fast food, junk food, eat while watching Tv etc. All better than starving to death.

Is any of this helpful? Might any of this or similar, work for him?

DS too dropped off the centiles. I will never forget the health visitor putting a biro mark in the margin below the lowest centile. I cried afterwards. It wqas one of the most stressful times of my life and it went on for years. But he did, eventually, grow out of it.

Is he spending most of his days in bed? Poor poppet. Do you have other children?