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?

The forehead is the first thing I noticed. Let's hope you have more luck getting the help you need today.

has she had iron and vitamin D testing?

the forehead is not in every photo, it is just the angle surely?

Definitely push for more , you’ve had some good advice on here .
Really hope your little girl gets the treatment she deserves , poor little lamb .
Best of luck ,op

forehead prominence that should say

The first thing I noticed was the forehead, it does look like quite a big bump. You must be so worried, I can’t believe they have been fobbing you off. Your poor little girl!
Once you get the right diagnosis you’ll know what to do and I bet she’ll feel much better straight away. It’s well possible that it’s bad allergies.

Love and sympathy to you both. Keep pressing for more help. Maybe ask your MP to put pressure on, if you’re refused any tests or given long waiting times?
I do hope this gets solved soon.

The forehead bump doesn’t look so bad in the second photo. What’s it like in real life, OP?

The first thing I noticed was her eyes. - the dark shadows and the puffiness. I’d wonder about allergies too and be looking at some kind of allergy screen. Do you think some kind of allergy could be disrupting her sleep at night? That would explain the ‘very tired but seemingly getting enough sleep’. Have her ears, throat and sinuses been checked? Does she snore (and thus keep being partly woken throughout the night)?

And yes, you should definitely go back and ask for further investigations. I hope you get to the bottom of this quickly.

Has she been tested for coeliac disease? It could account for some symptoms

Yes OP I definitely think you should take her back. Keep on at them!! She does look tired bless her

I echo @waybird recommendation of paediatrician Sunila Jog in Basingstoke. My ds when 3 was continually ill with some similar symptoms to your little one. Constantly exhausted, massive bags under eyes, recurring Infections. We got fobbed off loads of times from GP and it was such a worrying time. We were lucky at the time we could afford a private consultant appointment and we went to Sunila Jog. She was amazing and transferred us over to her NHS care. She treated son successfully and was so thorough in her Ince.
he has been fit as a fiddle ever since.
I hope you get some answers soon but think you need to seek help from experts on the mainland.

Absolutely take her back, she looks very unwell and also sounds it too, her eyes are very swollen and she is so so pale. Can you take her for a private consult in GOSH, as others have suggested.

I know what it is like to worry, we spent two years getting to the bottom of what was going on with my DD, we saw so many drs. and all the tests they did were clear until we finally met a Dr. who guessed what was going on, did the relevant tests and she was finally diagnosed.

Thinking of you.

That can’t be right 😮😕 poor little scrap 😕

Poor little thing. She's clearly poorly. :(

Also, if it's let's say a rare syndrome/illness, it's often hard to get doctors to spot it due to it being rare.

True. Doctors are taught to look for the most obvious causes and disregard the rarer ones (if you hear hooves on the high-street, it's probably not a zebra). Which is all well and good until it is a zebra and no one will diagnose it!

In the meantime get some double cream in the porridge to up the calories in it. Best of luck with getting to the bottom of the problem.

I put her back on formula for her bedtime bottle just to bump up some nutrients. She had been on cows milk prior to this.

Re further testing - she had an EEG in Southampton on the 8th of January, then Paediatric Neurology on the 31st of Jan - they didn’t say the results but said that it could be perhaps post viral CFS, and we have received a follow up for the 15th of July. Just not willing to leave her like this for 5 months. When everything opens I’ll be making some calls.

My DD has a rare illness. It took us 4 years and three countries to get an approximate diagnoses (she falls between two different types of rare bone tumor, neither diagnosis fits perfectly). My experience is that when you are unlucky enough to have something rare the diagnosis itself is a huge struggle.

Your DD has had extensive tests which have not revealed anything. Is she still waiting for the neuro referral? If yes, this is something I would push for asap. Otherwise I think her doctors, having failed to find anything serious, are waiting for either the symptoms to disappear by themselves, or for a new symptom to appear that will help with diagnosis.

Is it possible for you to take her to the UK? The Channel Islands have a good health care system (if you can pay) but are too small to cover rare diseases. To give you an idea, my DD goes to a specific hospital that looks after children from all over Europe and sometimes even further away - there are no other options. If you can take her to the UK talk to one of the big children's hospitals. Not all doctors will accept a private referral, e.g. some doctors at GOSH will only see NHS patients, but many will. They will also look at test results (have you kept a copy of everything? This is really important) and tell you whether their specialty is the best choice for further investigations, or suggest colleagues in other areas (we had this with DD as well, we did quite a bit of moving from one specialty to another even though her symptoms pointed to a more specific issue than your DD).

Sorry, cross posted re neuro-referral.

Poor baby. I'd be the same as you - up all night googling etc. I travel a long, long way by train to a specialist hospital to get my 3 year old seen for his issues. I get in debt because the travel costs so much but the free healthcare is so worth it. They let me stay over on the ward with him. His surgeon is incredible. You just have to keep pushing and find a good decent childrens hospital who will take you seriously. They can't turn you away. Your child deserves the care as much as any other.

Poor little mite, I wouldn't be happy at all to leave her 5 months until her next appointment. She looks so poorly bless her.

In response to the development questions - she has an amazing vocabulary, can count to 40, very good with puzzles and freehand drawing. She knows the alphabet and lots of phonics (thanks to her letter obsessed brother ).

She used to just be an absolute whirlwind, even the original doctor commented that most children of her age would be tearing around the room.

What are her toilet habits like?

It could be anything from relatively minor to something more serious. Post viral is a candidate as are allergies. Be reassured that there have been some extensive tests done which should have ruled out some of the most significant potential causes.

Suggest you go back to GP and ask for referral to a Paed. Or however it works in CI.

I can't see the photos but wishing you all the best for your daughter.

I hope your dd is ok and it's something easily remedied.