Worried about toddler DD (photos attached)

[DreamALittleDreamofMe]

Good evening all.
Just at the point of trying to get to the bottom of what could be wrong with my little girl.

At the end of October she became increasingly unwell with lethargy, staring into space, not really doing anything apart from laying on the sofa, being sick and very pale with bags under her eyes.

We went into hospital on the 25th of November where they took bloods, did an MRI head, ultrasound abdo, chest x-ray and referred us to neurology due to the staring into space.

However, 16 weeks on and she is still very much the same - she just doesn’t have much ‘go’ in her, I worry so much that something has been missed as I feel she looks horrific most days.

AIBU to take her back to hospital and ask for more tests?

That’s a lot of sleep aswell OP.

Take her back definitely.

Have you seen genetics?

Regarding genetic concerns, does she look like you or DP (or a mix) facially? If so that goes a long way to assuaging any genetic concerns.

Best wishes. She is a beautiful little girl.

One of my twins has some medical issues and he is very pale so gets dark circles but I would say your beautiful DD’s are far worse.

I take it they’ve checked blood sugars, in that photo she looks a lot like DT2 looks when he is hypoglycaemic. He doesn’t really get symptomatic until very low but some children can look and seem very poorly before they reach the hypo stage

You must be frantic, I hope you get to the bottom of it ASAP

@DreamALittleDreamofMe, I see someone up above mentioned Williams Syndrome, it might be worth specifically asking them to rule that out.

Fingers crossed you will get some answers soon and your little one will be back on the road to feeling better again.

She’s gorgeous but I think you’re right to keep pushing.

She's very beautiful op. Like pp I would push for a microarray genetics test. She does have a very elf like face, and her facial features would make me think Williams Syndrome, but her development doesn't really fit this. Does she look like your other child?

I can't see any pics either but wishing you all the best.

Glad they're looking into this further OP, thanks for the update. She's such a beautiful little thing

Did they test for coeliac disease OP ?

I I hope you don't need to wait long OQPi hope you don't need to wait long

Whoops! That was meant to say " I hope you don't need to wait long OP"

I was thinking about your little girl. Have you managed to get any answers? How has she been? x

@DreamALittleDreamofMe hope all is well

She's so cute

I did think Williams syndrome but I don’t think the symptoms completely add up? There’s a video of a little girl on the ‘Special books for special kids’ YouTube channel she has Williams syndrome and is a bit like an older version of your dd. It’s actually known for giving kids a very cute, almost fairy/elfin look, like your dd (absolute poppet). If you google it it should come up.

It is also possible there is a simple explanation like some sort of allergy going on but it can be hard to find them immediately. Have you noticed any particular triggers ?

Or Noonan syndrome, should have added.

How is her throat OP? Could be Mono.

OP please update my DS has similar symptoms -but more energy. We have been under paed for 18 months, no answers yet

@DreamALittleDreamofMe, have you been able to get to the bottom of your daughters symptoms?

Hi all. A little update, we are due our genetic testing results back this week. Our letter from Southampton Rheumatology said the genetic test is to test for Muckle Wells Syndrome. She has been on some medication for the inflammation and it's helping lots xxx

How is your wee darling doing? Any improvement or is she much the same? The waiting must be horrible for you

Hope you get some answers xx

Good luck OP .. I wish you and your daughter the very best x