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?

Something doesn't look right for that poor sweet child. I understand your concern. You are right to go in there and fight like hell for your child.

Could you afford to go private ? I honestly think this might be worth doing if you can find the money. Something is amiss, you're right to be concerned.

Just spent a while looking through every photo I’ve got of her on my phone, the forehead seems to have been therefore atleast the last year.

We are in the Channel Islands so no NHS here so all healthcare is essentially private already. I’m going to get on the case in the morning and hopefully get some answers. Just terrified, find myself up all hours googling horror stories and worrying.

I agree it needs to be seen, i at first thought you were talking about the forehead until i heard about the eye bags which yes they are really bag she looks like she has a lot of liquid under then and her head

I didn’t know that about the Channel Islands.

Always, always go with your gut instinct.

I also noticed her forehead straight away. Her eyes could be allergy related. If you don’t get any answers could you take her to the mainland. I would be inclined to take her to Great Ormond Street or Guys Hospital if you don’t have enough response. What does your GP say?

That is a lot of sleep. The lethargy worries me.
Poor wee thing.

OP I noticed the forehead first too. Then the eyes. Is her growth and development and learning all normal?
I would push and push for answers. You need at least to know why she has off days.
She's a sweetheart

Agree regarding seeking help outside of where you are. The fact they haven't even mentioned the way her head bulges is a concern in itself.

And try and stay away from doctor Google, I know it's easier said than done but it doesn't help ease your worries. It could be something as simple as a nasty allergy.

I’ve heard with adults dark circles can be an indication of heart issues. Goes with what @Hugsandpastries mentions.

I have no idea but seconding to push them to check her heart further also.

Take her back. I had this at about 2 and half. I was just allergic to a lot of things. My mum put a photo of me looking like that on a cake for my 18th because she thought it was hilarious 😬😬😬

On first glance I thought it was a shadow on your dd's forehead, but there seems to be a definite enlargement and I'm surprised that this wasn't noted back in November.

A bulging forehead in babies/infants is known as 'frontal bossing' which could be linked to a long list of genetic conditions - none of which your dd may have. I know how tempting it can be, but please stay away from Dr Google and focus on getting a proper real-time diagnosis for your dd asap.

Your dd needs to be seen by a paediatric specialist and I would also suggest that you ask what blood tests were carried out in November and request a print out of the results.

That's a lot of sleep and she should be waking up refreshed and ready for lots of play/activities. How old is she?

I don't need to see her whole face to know that your little blonde-haired dd is beautiful, OP. I hope that she'll quickly recover from whatever is causing her fatigue - once you have a diagnosis I'm sure she'll bounce back and be her old self again.

Good luck tomorrow (today) and I hope you'll come back to this thread with updates.

I too noticed her forehead; before I read the post I assumed she had fallen and hit her head. I don't have any answers, but I hope you find some. Something is definitely not right, she looks exhausted. Sweet baby angel.

where do people go from there for advanced investigations/treatments?

Did they test her blood sugar when they did the tests back in November? Our DS had huge bags like that under his eyes just before his Type 1 Diabetes diagnosis, and was also lethargic and funny with food. I'm sure they would have but just in case. Keeping everything crossed you get answers for your little one soon - as others have said just keep pushing. for you.

I honestly thought you were going to ask if she should go to A&E for a bump on her forehead when I first looked.

Take the photos from last year and show them to the doctor along with these ones.

Why is she on vitamin D? Has a doctor suggested it?

The forehead bulge was also the first thing I noticed. I hope you get some answers soon.

How did they test for celiac? The gold standard is an endoscopy and a biopsy, there is a blood test but lots of false positives.

I was just ablit to say ceoliec disease. My little girl didn't have it. But we had 6 months of constant infections and antibiotics before a paediatrician but her on profilatic antibiotics for 18 months. We've still got no answer to what happened or why the antibiotics worked if nothing was wrong with her according to tests and stuff but as you can imagine I did a lot of googling. And coeliac disease had a lot of these symptoms.

I hope whatever it is you get sorted soon. There is nothing worse than seeing your child ill and also seemingly hitting your head against a brick wall with medical professionals.

Don't freak out. Defo get checked out my, that is EXACTLY like I looked a child due to bring allergic to much stuff! Grass and different pollen were the worst x

Some people think pollen only has an effect in summer. Oh no. I got it bad!!!!

Poor munchkin, she doesn't look at all well. It must be very worrying OP. Where are you at with the doctors now? They haven't just given you the brush-off have they? What's their plan going forward?

The forehead bulge (frontal bossing) was the first thing I noticed. I assumeda head injury, esp with the eyes.

Did they check for thalassemia?

YANBU. Can you get her seen at a children’s hospital in the UK? She sounds, and from this pic, looks unwell and where you are there may be medics who can rule certain things out but don’t have the experience to know where to go from here. I really hope you can get her to someone who can start to piece things together and give you some answers.

I'd advise that you write out a 2 week diary (you don't need to wait 2 weeks, just write the last 2 weeks out), put the hours on the left, so 1am, 2am, etc for a whole 24 hours, then colour the hours sleeping as blue etc etc
It's a really good way of showing the blocks of time she is sleeping or inactive to highlight that she is only active for a very short time every day. GP''s sometimes need to be shown rather than told as they can assume a parent is exaggerating. From what you've said, the active part of your poor DD's day is very short indeed.

Take the diary back to GP and push, push, push. Insist that she is urgently seen by a paediatrician asap. If your GP doesn't know what's wrong, it's time to refer her over to the experts in hospital for tests and investigations.

I would go to the UK and see a specialist. There is definitely something going on with her. Can you afford to pay to see an expert at one the children's hospitals like Great Ormond Street Hospital in London

www.gosh.nhs.uk/

Definitely push for a referral to see a paediatrician