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?

Same here, I think I wasn't quite 3. People didn't bother themselves with what wasn't their business as much back then though.

This is one of the maddest things I've ever read on here. This is a 2-year-old child who weighs 5 stone! If the issue was food intake, it would be fairly obvious because she'd need a lot more than an extra biscuit a day or a few additional bottles of milk to reach that weight so rapidly. The mother is obviously going out of her mind with worry and this kind of weird patronising post is so unhelpful.

Why post on here then if it’s all in hand???

Because im worried. This has been going on for around 2 years. I keep getting fobbed on yet I no as her mum there's something going on

@Cjkd24
What I meant was go back to the GP and ask them if they can contact the specialists or if you’re feeling fibbed off you could ask to be referred to another hospital for a second opinion.

I work in the nhs - we get GP letters all the time and they do get considered when we receive them and we get new referrals if people want a second opinion. If you aren’t happy then you have the right to ask for that.

I am sorry you are in this situation but apart from doing that I’m not sure what else would work.

@NiceCupOfChai there was absolutely no need for your rudeness

*fobbed off not “fibbed”

Sorry I thought u were talking to me. We saw the endocrine team 8th December and still haven't had a report about the next steps, her consultant can't do anything without that report apparently. Both hospitals are telling us to wait for the genetics bloods which were meant to be taken on 30th of September, I then got a call monday just gone to say oh sorry when she had her bloods done we didn't actually do the genetics bloods. We had been waiting 14 weeks for those results. She then went in Tuesday for yet another blood test and they have now sent the genetics but we have to wait for the results for that and still nothing from the endocrine team. We just keep getting left and nothing actually being done

@Cjkd24
dont worry
I would firstly contact PALS at the hospital giving them the whole time line and explaining you find this concerning and a huge worry - their details will be on their website. I would email them so you have this in writing and ask them to confirm receipt of your email and request an urgent meeting with the relevant parties.

if she’s in nursery get the keyworker to write a supportive statement and also, make your own referral to your local children’s services and a social worker will then be allocated to your case. Some people find the concept of this scary but they are helpful and can advocate for you and your daughter and can help with future necessary referrals as appropriate. I’ve been involved with afew cases where relatives have done this both for adults and children and it could well fall into safeguarding (not in a negative way like neglect but for your daughters health) which is a separate pathway and should hopefully be dealt with much quicker. Social services will be supportive of you as you are actively choosing to engage with them for help and advice.
I hope you can get this resolved x

Do you all eat the same food ? How is everyone else’s weight? I had a friend who was the only overweight one in the family (as in they ate the same food and everyone else was a regular healthy weight). she became a type one diabetic at 16, which is very unusual. On reflection they felt she had always had a pancreas problem. Apparently it takes a long time for the pancreas’s to stop working for some diabetics. This was in the 80’s and 90’s and she always got very slightly off insulin results. I’m sure they are much more sophisticated in how they manage diabetes now .

My daughter is having genetic testing done and we've been told up to 6 months for results. Beyond frustrating that it takes so long...and then to find it hadn't actually been done. I feel for you. The waiting game for any type of result is unbearable.

It's dreadful that they didn't do the genetic tests when they said they had done them & that so much time has been wasted. Have they given you any indication as to how long the test results should be? Can you find out how much it would cost through a private endocrinologist (and whether that would be quicker)?
I'm so sorry you're going through this. My son had a pituitary tumour & although he's been fortunate in not developing hypothalamic obesity I know kids who do suffer from it and it's really difficult to manage. I know that genetic conditions which result in obesity are similarly very challenging. Not to jump to any conclusions in your daughter's case of course.
It's also very disheartening that people without experience of these types of conditions assume all weight gain is diet related. These kids can eat next to nothing and still gain huge amounts of weight.
I hope you find answers & some help soon.

They have said they results could take 3 months but im hoping they are going to fast track them as they missed them 14 weeks ago. They haven't even given us idea of what it could be either they have just said wait for genetics. That's what both hospital are waiting on as her bloods are showing high insulin and high ALT liver function. Shes had a gtt and her insulin was still high at 51 but alot lower than before and her alt was still high which it has been on all 4 blood tests now

They told us 3 months but they might be able to fast track them as they missed them, so they are at fault. The bloods are now in Cambridge so not sure how long now

Have you asked about ROHHAD? Rare but worth considering.

Absolutely you should push for them to prioritise her results given they already messed up. This is resulting in a delay in diagnosis and possibly treatment.
It’s not always possible to speed things up but you’re right to try.

Tbh ive never even heard of that

I should find out tomorrow if they will speed it up as its crazy

@Cjkd24https://my.clevelandclinic.org/health/diseases/rohhad-syndrome

Hyperthyroidism causes weight loss.

also Issues like prada willi and cushings do cause weight gain, but as a consequence of an increased appetite so patients will eat insatiably.

gh deficiency they are short, o/p’s dd is above average height.

weight gain with normal growth but very little appetite and low calorie intake doesn’t fit any of the usual suspects that would cause weight gain, especially to this extent. It’s also odd that the child is normally active- the energy for that and fat storage has to be coming from somewhere. I’d expect extreme lethargy to gain weight on so few calories.

All o/p can do is wait for the medical investigations to turn something up, which may take a while.

The weight gain in ROHAAD syndrome is also due to increased appetite and eating.

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

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?

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.

Are you or your partner also significantly overweight?