Has anyone else's child had this

[Cjkd24]

Looking for some advice.
My daughter is 3 in April.
She hardly eats but her weight is rapidly increasing. She doesn't snack she eats minimal at meals. She doesn't like sweet things she will eat fruit if anything.
She currently weights 31.8kg (5 stone) shes put on 14kg (2.2 stone) in a year.
Shes seeing a paediatrician and a paediatric endocrine specialists but yet we still have no answers.
I feel like im at a loose end.
Has anyone got any ideas?

Optometrist?

Yes - it may not be an obvious suggestion. Connection is this: pituitary tumours can cause a condition called hypothalamic obesity, because the pituitary gland sits up against the hypothalamus & can cause dysfunction there. My son has a craniopharyngioma. He was diagnosed after being sent for an MRI after failing a visual field test. If you have a tumour in the optic chiasm (where the optic nerves cross) vision in your periphery is affected. Thankfully he does not have hypothalamic obesity, but many kids with craniopharyngiomas have it & I've met kids with HO who were diagnosed after visual testing. It is an extremely rare tumour, but other things can go wrong with the pituitary also.

I don’t know where in the country you are but can you get referred to a specialist centre like this one?
https://www.cuh.nhs.uk/our-services/childrens-services-paediatrics/childrens-services-a-z/complications-from-excess-weight-in-children-cew-paediatrics/

There are clinics like it all over the UK
https://www.england.nhs.uk/get-involved/cyp/specialist-clinics-for-children-and-young-people-living-with-obesity/

To be honest even if they find a cause it might not be anything reversible and these clinics have a holistic approach and could help you with how to manage it in future

But that doesn't pin point the cause. We need to find the cause before anything else

I know you’re worried and scared for your daughter but do remember that doctors aren’t Gods. They don’t know every disease, genetic illness etc that exists. Some things are still unknown.

Definitely push for an MRI in case of a growth near the pituitary. But remember that they’re doing what they can - and that they don’t know everything.

How old are your other kids?

It's far more likely one or more of them are feeding her, than she has some ultra rare genetic disorder that doesn't have a test yet..

I agree. My daughter has a different type of BT, and whilst it shouldn't be connected to growth for to where it is, it clearly had an effect -albeit the opposite for her.- 16kg at 7y. Ophthalmology isn't how she was diagnosed but it's how a lot of these things get picked up.

Wit a few of the records holders for worlds tallest people have a pituitary tumour. They can often be removed, but it's really important that it's on the list to check for, even if it's just so it can be discounted.

Youngest after her is 12 eldest 18

Happy to be corrected but if it was a pituitary/hypothalamus issue it would be through the pathway of hormonal dysregulation and therefore picked up by endocrine blood tests.
I can’t think of what pituitay abnormality would appear on MRI that would cause such massive weight gain but with completely normal hormone profiles, so interested in what pathophysiolgy you think is going on here? What is it you’re looking for?

It can happen every rarely that bloods are within normal ranges and there is an issue. In this case with the absence of any other breakthrough it would be highly advisable for OP dd to have a brain MRI.

I didn’t know this. I’m interested to know the cause of the weight gain if hormone levels are normal? As in what’s would be driving the obesity?

Have you seen the child? Obviously this is not a case of overeating!

I’ll PM you. Or try to! The more I read of your thread the more similarities I see with my daughter. Which is presumed now to be hypothalamic obesity but that is a diagnosis of omission really in her case. She has some brain differences which we found when scanning for a pituitary tumour. That’s not what they found; they found something very different and exceptionally rare so will be very outing in here. When I said on my previous posts that I don’t have any answers I meant I’m afraid all the genetic testing hasn’t thrown up answers yet, or treatment. But we are always hopeful. Genetics is a field which is moving incredibly quickly.

Certain blood testing could flag if there's an issue. Pituitary tumours can cause growth hormone deficiency, cortisol deficiency for instance.

But cortisol levels rise and fall through the day, so a one off test will not be that helpful, unless say done in the morning (when it should be high) and it comes out low, then that should raise alarm bells.

I imagine that endocrine testing would test GH levels - but a result could be in range despite a tumour. You would need to do a GH stimulation test to really work out whether the pituitary isn't firing the right signals. That's not a one off blood test.

But isn’t pituitary/hypothalamic weight gain also a result of appetite disregulation?

I can see why the dr’s are at a loss. Most disorders that cause weight gain do so because they increase appetite. The patient eats more, and gains weight.

if the child is well and functioning normally, and is clearly growing well too, then she is using the calories she’s eating to do that. To store fat on top she needs to be eating enough calories to fuel her daily needs, plus more.

physics tells us you cannot create energy from nothing.

if the child has an issue where she cannot utilise the calories she’s eating as energy and it’s stored as fat, then we’d expect to see that at the expense of growth deficits, fatigue etc.

it’s a puzzle.

if you din’t offer food o/p, does she just not eat? Does she ask for food at all?

There are people with HO who do not have hyperphagia. No matter what they eat, they pile on the weight.

do they have normal activity levels? Does it affect growth in children?

surely if they don’t have hyperphagia then the effects would show elsewhere- you’d gain fat but at the expense of growth/expendable energy.

So you're saying it's not a thing - and I'm telling you, it absolutely is. This isn't behavioural, it's medical and tragic.

No, I’m not saying it’s not a thing.

i’m asking how an individual can have an extremely low calorie intake, put on weight, and have enough energy resources to lead a normal, active life and still grow normally.

i can’t think of any disorder where that would happen. It’s a balance- even with a very low tdee due to an unknown disorder, to gain weight you’d see the effect on resources available for daily activity and growth.

physics tells us you can only convert energy, not create it. So with a limited energy intake, to gain weight there must be a give somewhere.

although I’ve just read op’s posts and although she initially says her dd is very active, later she says she’s moody and tired. Which would be what I’d expect if she can’t access the energy from food or fat stores.

She has become tired and moody lately due to not sleeping well but yet she is still active. Just because she is moody and tired doesn't mean shes not active

I’d want to rule out an adrenal tumour personally

Shes had an abdomal ultrasound

My DD had some tests to rule out an adrenal tumor. They did an ultrasound first but couldn't actually see the adrenal gland on the scan. Apparently it's so small they often can't see it. The next step was an MRI scan because that's the best way to see the adrenal gland and rule out any tumor.

Has your DD had an MRI? I think that would be something to ask for.