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Has anyone else's child had this

210 replies

Cjkd24 · 08/01/2026 19:15

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?

Has anyone else's child had this
Has anyone else's child had this
Has anyone else's child had this
Has anyone else's child had this
OP posts:
Thread gallery
8
Cjkd24 · 11/01/2026 22:10

Freepaintjob · 11/01/2026 22:05

OP this is from ChatGPT

Here’s exactly what she should do next, in priority order.

1. She needs a
named consultant paediatrician
(not GP, not “waiting list”)

If she hasn’t already been seen by a hospital paediatric consultant, this is the block.

She should say (verbally and in writing):

“My child requires review by a consultant paediatrician. This cannot remain in primary care or administrative waiting lists.”

If she has seen one, she should:

  • get the consultant’s full name
  • confirm they are responsible clinician

This matters legally and administratively.

2. Force a
tertiary referral decision
(yes or no — documented)

She should email or write (copying PALS):

“I am formally requesting an urgent tertiary referral to Great Ormond Street Hospital for genetics/endocrine/metabolic assessment.

If this referral is not being made, I require the clinical rationale in writing.”

Doctors hate putting refusals in writing without good reason. This often flips the decision.

3. Ask for
Advice & Guidance to GOSH
(this is key)

Even if they won’t refer yet, they can and should do this.

Exact wording:

“If a full referral is delayed, I’m requesting Advice and Guidance from GOSH to determine urgency and interim management.”

Advice & Guidance:

  • goes consultant-to-consultant
  • often results in GOSH replying: “Please refer urgently”
  • bypasses long waiting lists

4. Escalate beyond PALS →
Clinical Director

If PALS isn’t getting traction, she should ask PALS:

“Please escalate this to the Clinical Director for Paediatrics.”

This is the consultant’s boss. That gets attention.

5. Make a
formal written complaint
(not just PALS)

This is different from “raising concerns”.

She should submit a formal NHS complaint to the Trust stating:

  • child is 2 years old
  • weighs 5 stone
  • poor intake
  • 14+ weeks waiting
  • no tertiary referral yet
  • risk of harm due to delay

Formal complaints trigger:

  • deadlines
  • senior review
  • written responses

6. Contact the
ICB (Integrated Care Board)

This is the body that commissions care.

She (or PALS) can say:

“I believe my child meets criteria for urgent tertiary referral and this is not being actioned. I’m requesting ICB involvement.”

ICBs can override delays.

7. Last-resort accelerators (they work)

If she’s still stuck:

a)
MP letter

A short email to her MP:

“My 2-year-old has extreme medical needs and NHS delays are preventing specialist care.”

Hospitals respond fast to MPs.

b)
A&E if deterioration

Not dramatic — appropriate.
Admissions force senior reviews and same-week referrals.

We were referred to st George's for endocrine they didnt mention gosh. Ive been to pals im waiting on their reply

OP posts:
Cjkd24 · 11/01/2026 22:11

HK16 · 11/01/2026 22:06

Are you or your partner also significantly overweight?

No. Me my partner and other 6 children are not overweight at all

OP posts:
Theonlywayicanloveyou · 11/01/2026 22:24

I know it’s expensive but can you afford say £250 for a one off consultation with a private paediatrician? I’d be looking for a second opinion

Cjkd24 · 11/01/2026 22:25

Theonlywayicanloveyou · 11/01/2026 22:24

I know it’s expensive but can you afford say £250 for a one off consultation with a private paediatrician? I’d be looking for a second opinion

We are looking at that tbh as this is crazy whats going on and how we have been treated by them

OP posts:
ItsSlipperyWhenWet · 11/01/2026 22:27

Has she had an ultrasound?

Cjkd24 · 11/01/2026 22:28

ItsSlipperyWhenWet · 11/01/2026 22:27

Has she had an ultrasound?

Yeah she has had one on her abdomen

OP posts:
ItsSlipperyWhenWet · 11/01/2026 22:31

Cjkd24 · 11/01/2026 22:28

Yeah she has had one on her abdomen

Recently?

ItsSlipperyWhenWet · 11/01/2026 22:31

Cjkd24 · 11/01/2026 22:28

Yeah she has had one on her abdomen

Recently?

Cjkd24 · 11/01/2026 22:32

ItsSlipperyWhenWet · 11/01/2026 22:31

Recently?

Ermm it was in October

OP posts:
ItsSlipperyWhenWet · 11/01/2026 22:33

Cjkd24 · 11/01/2026 22:32

Ermm it was in October

I would get another one done and if you can go privately and ask them to scan her adrenal glands.

Hollyhobbi · 11/01/2026 22:39

HarvestMouseandGoldenCups · 11/01/2026 21:54

You’re right, I meant hypothyroidism. Good catch.

Im an ex nurse plus I now have hypothyroidism myself (not due to thyroid hormones though) and my dd has hyperthyroidism. So unfortunately I know a bit about thyroid diseases!

stichguru · 11/01/2026 22:41

I am not at all medical but one thing I did think is could she have a disorder where she can't process some particular nutrient? I know some people may become seriously underweight if they have say Ceiloacs Disease, but some people can become overweight too. I expect there may be other conditions where the body doesn't process certain nutrients correctly and so they end up as fat.

Cjkd24 · 11/01/2026 22:46

stichguru · 11/01/2026 22:41

I am not at all medical but one thing I did think is could she have a disorder where she can't process some particular nutrient? I know some people may become seriously underweight if they have say Ceiloacs Disease, but some people can become overweight too. I expect there may be other conditions where the body doesn't process certain nutrients correctly and so they end up as fat.

Yeah maybe. I have searched so much and I cannot find what she has its crazy. Ive asked chat gpt I asked on here ive asked FB nowhere can I find any other child like this. Its baffling my brain

OP posts:
Usernamenotfound1 · 11/01/2026 23:53

HarvestMouseandGoldenCups · 11/01/2026 21:59

Prader Willi doesn’t fit with the daughters lesser appetite but weight gain can happen on a lower calorie amount than normal due to their metabolism and calorie needs being lower. No?

Does she have any other health issues Op? Alström Syndrome could be a possibility @Usernamenotfound1?

Again though Alström syndrome the weight gain is associated with excessive eating.

plus o/p says the child is otherwise well, plays normally, doesn’t sit still, energy levels seem fine etc. she’s also normal height so that would not indicate a growth issue.

even if they have low calorie needs due Ito a metabolism issue, you can’t create energy from nothing. So again if the child is gaining weight on such little calorie intake, I’d expect lethargy and other signs as all their energy intake is being redirected to fat storage. She’s also growing well so again energy for that is coming from somewhere.

it’s a puzzle and following with interest.

HarvestMouseandGoldenCups · 12/01/2026 00:23

Definigely a puzzle. Maybe hypothalamic dysfunction or severe insulin resistance.

Hope you get answers OP.

Twinsandsome · 25/01/2026 21:28

Hi @Cjkd24 did you ever get any answers? X

Cjkd24 · 25/01/2026 23:04

HarvestMouseandGoldenCups · 12/01/2026 00:23

Definigely a puzzle. Maybe hypothalamic dysfunction or severe insulin resistance.

Hope you get answers OP.

They have said mild insulin resistance but have to wait for genetics to see if anything else. I dont think this is mild at all

OP posts:
Cjkd24 · 25/01/2026 23:05

Twinsandsome · 25/01/2026 21:28

Hi @Cjkd24 did you ever get any answers? X

Hi, they have said mild insulin resistance and to wait for genetics results but thats all. Shes going for an ecg this week. They haven't done anything else or given anything to stop the weight gain etc

OP posts:
ThePure · 25/01/2026 23:46

I also thought that most of these genetic syndromes where children gain weight like PWS are due to abnormally increased appetite.

It must be so worrying but I think an expectation that they can just give something to stop it is unlikely and that it will be about excluding serious treatable causes and then trying to manage it.

I know you are keeping a food diary but is it to the extent of weighing all her food? I think they are going to need that level of data if/ when you do get a tertiary referral.

ThePure · 26/01/2026 00:01

I also don’t think that a one off private consultation would help unless it was with a very super specialist person.

You need a specialist clinic https://www.england.nhs.uk/get-involved/cyp/specialist-clinics-for-children-and-young-people-living-with-obesity/

I know you said the bloods are in Cambridge and they have one of the top specialist centres in the country there so I think things are going along the right lines although frustratingly slowly
https://www.goos.org.uk/patients-and-families/what-happens-when-i-come-to-cambridge

NHS England » Complications from Excess Weight (CEW) clinics for children

NHS England » Complications from Excess Weight (CEW) clinics for children

https://www.england.nhs.uk/get-involved/cyp/specialist-clinics-for-children-and-young-people-living-with-obesity/

Cjkd24 · 26/01/2026 08:11

ThePure · 25/01/2026 23:46

I also thought that most of these genetic syndromes where children gain weight like PWS are due to abnormally increased appetite.

It must be so worrying but I think an expectation that they can just give something to stop it is unlikely and that it will be about excluding serious treatable causes and then trying to manage it.

I know you are keeping a food diary but is it to the extent of weighing all her food? I think they are going to need that level of data if/ when you do get a tertiary referral.

We weren't weighing at 1st but we have been the last few weeks and taking pictures of her food and whats left aswell

OP posts:
Cjkd24 · 26/01/2026 08:12

ThePure · 26/01/2026 00:01

I also don’t think that a one off private consultation would help unless it was with a very super specialist person.

You need a specialist clinic https://www.england.nhs.uk/get-involved/cyp/specialist-clinics-for-children-and-young-people-living-with-obesity/

I know you said the bloods are in Cambridge and they have one of the top specialist centres in the country there so I think things are going along the right lines although frustratingly slowly
https://www.goos.org.uk/patients-and-families/what-happens-when-i-come-to-cambridge

They are also going to be looking into ROADs blood test case study but unsure when that will be

OP posts:
ThePure · 26/01/2026 08:35

https://www.goos.org.uk/patients-and-families

Loads of good info on this page. Looks like you need to get referred to Professor Sadaf Farooqui in Cambridge. Severe obesity before the age of 5 is unusual and does often have a genetic cause so ignore people suggesting it is your fault.

Cjkd24 · 26/01/2026 08:37

ThePure · 26/01/2026 08:35

https://www.goos.org.uk/patients-and-families

Loads of good info on this page. Looks like you need to get referred to Professor Sadaf Farooqui in Cambridge. Severe obesity before the age of 5 is unusual and does often have a genetic cause so ignore people suggesting it is your fault.

Thank you. I no its not my fault. Everyone ive spoke to has been the same suggesting its my fault u til they hear the whole things and see what she eats and how she is everyday then they are as confused as me and her dad are. I have 6 kids and she eats alot less and prefers savory stuff where as the other 5 prefer sweet stuff and she is the only one like this

OP posts:
Twinsandsome · 26/01/2026 09:12

I hope the test results don’t take too long I’m sure you’re worried sick. I’m glad she’s getting an ecg to make sure the extra weight it’s my effecting her heart x