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Original poster

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
Original poster
Cjkd24 · 21/02/2026 23:45

Lindy2 · 21/02/2026 23:28

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.

Show quote history

No she hasn't shes has had a gtt, ultrasound, blood tests, genetics and an ecg

OP posts:
namezchangez · 22/02/2026 00:07

The blood results aren’t in the normal range. She has very low iron, low ferritin, low transferrin saturation. So, at least, she has iron deficiency though not (yet) anemia.

OP, I get that you must be very worried. While you wait could you make sure she’s having a good multi-vitamin which covers the whole iron requirement and vitamin D (a bit low)?

Original poster
Cjkd24 · 22/02/2026 00:09

namezchangez · 22/02/2026 00:07

The blood results aren’t in the normal range. She has very low iron, low ferritin, low transferrin saturation. So, at least, she has iron deficiency though not (yet) anemia.

OP, I get that you must be very worried. While you wait could you make sure she’s having a good multi-vitamin which covers the whole iron requirement and vitamin D (a bit low)?

Shes having iron and vitamin d supplements now

OP posts:
BlackSwan · 22/02/2026 08:12

Cortisol of 106 at 10:30am could possibly be low. Sorry, I know I'm commenting a lot here, and I'm not a dr, but something isn't right. My son has cortisol deficiency because of his pituitary tumour...
I would ask the endocrine team you have already seen if they can repeat the test at 8am, when it should be higher - even your GP could do this. If it's not in normal range at 8am then that's a concern.
Cortisol deficiency can cause tiredness & moodiness.

PoppySaidYesIKnow · 22/02/2026 20:21

It will pay to be explicit - ask them (all drs dealing with you) could this be a pituitary gland tumour - and tell them you want this ruled out.

Original poster
Cjkd24 · 04/03/2026 23:18

The new endocrine specialists who we saw on the 26th feb have called today to admit her for the minimum of a week for investigations as the still dont know

OP posts:
Original poster
Cjkd24 · 05/03/2026 08:53

Hopefully now we may get answers. This hospital isn't our local one, the local one doesn't no what to do next but this new endocrine specialists seems to be concerned. I dont get why they 1st specialists didnt do this in December instead of just wait for genetics

OP posts:
ThePure · 05/03/2026 08:56

Im pleased to hear it’s being taken seriously and I hope you do get answers from this. They have to work through a process. If the genetics had been positive then there would have been no need for an admission which is inevitably distressing for a young child. Part of the reason for admission will be to see what her weight and her food intake etc is like in a controlled environment.

Original poster
Cjkd24 · 05/03/2026 10:00

ThePure · 05/03/2026 08:56

Im pleased to hear it’s being taken seriously and I hope you do get answers from this. They have to work through a process. If the genetics had been positive then there would have been no need for an admission which is inevitably distressing for a young child. Part of the reason for admission will be to see what her weight and her food intake etc is like in a controlled environment.

Yeah they have said they want to see how she behaves around food and her hunger ques. Aswell as doing a sleep study

OP posts:
Somuchgoo · 05/03/2026 10:07

ThePure · 05/03/2026 08:56

Im pleased to hear it’s being taken seriously and I hope you do get answers from this. They have to work through a process. If the genetics had been positive then there would have been no need for an admission which is inevitably distressing for a young child. Part of the reason for admission will be to see what her weight and her food intake etc is like in a controlled environment.

I don't think it needs to be ' inevitably distressing' for her in general, aside from any tests they may want to do, obviously. They'll probably have a playroom, a play specialist etc, so try to keep it light and cheery like a big adventure.

She's young enough that playing with new toys, maybe seeing the therapy dog (if they come around), and probably being a lot more screen time, will help.

She'll take her lead from you, so if you are clearly worried, she will probably be. I suspect there'll be a lot of blood draws, but hopefully those can be done through a cannula, which helps (once the damn thing is in).

Good luck.

Original poster
Cjkd24 · 05/03/2026 10:15

Somuchgoo · 05/03/2026 10:07

I don't think it needs to be ' inevitably distressing' for her in general, aside from any tests they may want to do, obviously. They'll probably have a playroom, a play specialist etc, so try to keep it light and cheery like a big adventure.

She's young enough that playing with new toys, maybe seeing the therapy dog (if they come around), and probably being a lot more screen time, will help.

She'll take her lead from you, so if you are clearly worried, she will probably be. I suspect there'll be a lot of blood draws, but hopefully those can be done through a cannula, which helps (once the damn thing is in).

Good luck.

Show quote history

Shes pretty good with bloody tests as there's been so many of them now. Ill be taking her home comforts aswell the main thing will be of an evening when her dad is usually home from work and her siblings would be home from school

OP posts:
BlackSwan · 05/03/2026 11:03

This sounds like a good plan. Have they mentioned doing an MRI while she is admitted?

Original poster
Cjkd24 · 05/03/2026 11:53

BlackSwan · 05/03/2026 11:03

This sounds like a good plan. Have they mentioned doing an MRI while she is admitted?

They haven't mentioned it but I did mention it when I went for the appointment. They said they are going to do other tests first as putting her to sleep for it comes with quite a few risks due to the weight.
This is her weight increase

Has anyone else's child had this
OP posts:
Eggdilemma · 05/03/2026 13:46

They will so be doing this to make sure she is eating the amounts you report. It’s as much a medical observation period as it is a parental observation. So if you feel watched it’s because they have to so don’t take it personally

BlackSwan · 05/03/2026 16:58

Cjkd24 · 05/03/2026 11:53

They haven't mentioned it but I did mention it when I went for the appointment. They said they are going to do other tests first as putting her to sleep for it comes with quite a few risks due to the weight.
This is her weight increase

Show quote history

What about her height? Has she been growing as expected on her chart?

Original poster
Cjkd24 · 05/03/2026 17:10

BlackSwan · 05/03/2026 16:58

What about her height? Has she been growing as expected on her chart?

Show quote history

Shes following 91st centile since she was 14 months old

OP posts:
BlackSwan · 05/03/2026 17:26

OK, so sounds like she's still producing growth hormone... with some pituitary issues that drops off pretty sharply.

Original poster
Cjkd24 · 05/03/2026 17:27

BlackSwan · 05/03/2026 17:26

OK, so sounds like she's still producing growth hormone... with some pituitary issues that drops off pretty sharply.

Im just hoping that by the time we leave we will have the answers

OP posts:
BlackSwan · 05/03/2026 17:28

Yes for sure. It's encouraging that they're paying attention now. I really hope you get to the bottom of it.

PoppySaidYesIKnow · 05/03/2026 17:46

Hope you get the answers you need.

sqwer · 05/03/2026 21:44

Who ordered the genetic tests? If it was a paediatrician or endocrinologist, ask for her to be reviewed by a clinical geneticist. They might have more ideas about what the cause might be.

Original poster
Cjkd24 · 05/03/2026 22:06

sqwer · 05/03/2026 21:44

Who ordered the genetic tests? If it was a paediatrician or endocrinologist, ask for her to be reviewed by a clinical geneticist. They might have more ideas about what the cause might be.

Paediatrician ordered the genetics but she now has no idea what it can be and has no ideas. The endocrine team is the one who is admitting her as she doesn't no so wants to investigate

OP posts:
Toosoonforahotcrossbun · 09/03/2026 22:13

I have nothing helpful to add @Cjkd24 but hope you find out what is going on soon.

Original poster
Cjkd24 · 09/03/2026 22:36

Toosoonforahotcrossbun · 09/03/2026 22:13

I have nothing helpful to add @Cjkd24 but hope you find out what is going on soon.

I will update everyone fingers crossed we get answers

OP posts:
Soontobesingles · 09/03/2026 22:46

Been thinking of you @Cjkd24 hope you get the answers and treatment for your DD.