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?

If it hasn’t been suggested- I would look into ROHHAD syndrome and see if it could fit

How’re things going?

There's no beds available at the moment so she hasn't been yet

They are looking into ROHHAD as a possible diagnosis

Oh wow. At least a step toward a diagnosis.

the obesity associated with ROHHAD is still a result of increased appetite though so how are the explaining her weight gain and lack of eating?

Gosh. I’m so sorry that it may be something so serious. It must be a very stressful time for you . It sounds like early intervention is very helpful if it does turn out to be that, so well done for continuing to push.

Hi, they didnt tell me they sent a appointment report and it states it in that. They still haven't admitted her or anything

I hope you get the right diagnosis soon, you’ve both been let down so much up to now.

Thank you. I no this has been shockin

I don’t think this is correct based on what I’m reading online. normal intake can make a child obese because the body stores energy abnormally and the metabolism slows right down.

I completely forgot to update. We ended up in the hospital for 2 weeks. She was seen by dietician, ent, endocrine, respiratory and has 4 sleep study, x-ray, ecg, mri, camera up her nose and down her throat and 20 viles of blood taken. They have said she has sleep apnea and needs a cpap machine and they still dont no what the weight is about. She is on antibiotics 3 days a week for 6 months to prevent chest infections. They are trying to say suspected ROHHAD Without Hyperphagia which makes no sense

Why does that not make sense? From what I am reading that is a valid diagnosis. ROHHAD (Rapid-onset Obesity, Hypothalamic dysfunction, Hypoventilation, and Autonomic Dysregulation) can occasionally present without the classic symptom of hyperphagia (uncontrollable eating). In these atypical cases, patients often present later in childhood and are diagnosed primarily through hypoventilation (breathing difficulties) and signs of an underactive autonomic nervous system. the obesity is driven strictly by endocrine or autonomic failure rather than caloric intake.

Because from the leaflet I was given the most common symptoms are extreme hunger, struggle breathing all the time and tumors aswell as obesity. She struggles to breath when she has a cheast infection or when she is on the move not all day everyday, she hardly eats and she has no tumors inside her

Hyperphagia means extreme hunger. So they’re saying she may have the condition without the symptom of extreme hunger. They have said she has apnoea so that is a breathing issue and maybe she doesn’t have tumours either - 60% don’t according to what I’ve just read . It’s a working diagnosis that they’re exploring anyway. I’m glad they’re doing something and not just saying she’s eating too much.

Does she have other matching symptoms? Sweating, unusual pain perception, irregular heart rate?

She sweats alot when moving but thats due to the excess weight. She doesn't have any of the other symptoms