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?

I agree with all the other posters. Will you keep us updated? The sleep diary is a great idea and I'd also add in a food and poo diary. Please continue to pester the GP. I hope you get some answers x

Can you try a different GP? Write down all her symptoms and timeframe of them

Keep diaries on everything. Food, sleep, mood. Don’t let them fob you off. She does not sound to be as she should. Hope you get sorted quickly op

Poor little thing - and pie you, you must be so worried. My first thought was allergies when I saw your pictures - her eyes remind me of what is known as ‘allergic shiners’ - dark, puffy circles around the eyes. My little one had a pronounced line down his forehead (rather than a bulge) that we saw a cranio surgeon about - we were referred to hospital by our GP, and then the hospital paediatrician referred us on to cranio. He got the all clear but could be worth a try for your little one? I’m not sure how to explain the lethargy - I’m assuming her iron levels came back ok? Wishing you both well xx

If you’re in the Channel Islands can you get a referral for Southampton Children’s Hospital? Or can you see one of their paeds in a private clinic over there (sometimes they do travel). It’s an excellent hospital, one of the best. Aside from that I’m not sure what the issue could be. With the food/appetite what’s her poo like? Constipated children don’t tend to eat well

OP her forehead was the first thing I noticed too. Wishing you and her all the best with your investigations.

Another one who noticed the forehead purely from the thumbnail. I agree she looks unwell.

Not the same thing AT ALL, but when my baby was 6 weeks old I knew something wasn’t right, we were admitted into hospital on FOUR separate occasion we he came out worse than he came in, I saw all sorts of different doctors and nurses and was fobbed off with reflux, milk allergy etc etc in the end, they told me he would still have symptoms for a while so just keep at it. I knew they were wrong but they’d made me feel mad and I don’t think I’d have gone back, during a weekly health visitor check she took one look and sent me on my way to an a&e department an hour a way and within 24hours my baby was having life saving open surgery. The very first nursing assistant who saw him in that hospital made the correct diagnosis immediately despite all the other so called experts we’d seen before!

Always stick with your gut. I cant understand how anyone is just telling you it’s ok for her to sleep that long or be wipes out for days after a small shopping trip let alone anything else! Poor little mite x

Have you had her tested for lupus or paediatric arthritis? Both are debilitating and lupus especially is very hard to diagnose. I speak as a person with lupus and arthritis, diagnosed at 16 years old. It's not just older people who get it.

I know you have been seen by neurology but my younger sister has epilepsy and when she was small it would manifest itself in the way of absences etc. She now sleeps ridiculous amounts after any kind of seizure and if she's had a seizure she will be pale, lose appetite, look very ill until she's slept, but if she has a few in a row or a short space of time she will maintain that sickly look. Have a read up and keep an eye out for any twitching and that sort of thing, epilepsy is absolutely not always these massive seizures.

might be with asking for microarray testing too (genetics). I have a child with an underlying chromosome disorder and sometimes things can be unlocked via genetics. Those tests usually take month to come back with results so nothing quick but it's only a blood test.

hope you get to the bottom soon.

and agree, the forehead is something I noticed too

has she been seen by pediatrics doctors?

Poor little thing, she does look exhausted and I noticed the forehead too. Keep pushing until you get an answer. Can you afford to go private for tests at all?

Hope you get some answers soon, what a worry for you

100% trust your gut feeling.

I also noticed her forehead, seeing her everyday you probably wouldn't notice so much- especially being told by the Drs nothings wrong...

But somethings not quite right.
Not normal behaviour for a toddler either poor baby, hope she's better soon.

I immediate thought allergies

www.choc.org/neuroscience/craniosynostosis/?

Acquired hydrocephalus?

Are her teeth coming through normally ? Nails ok ?

How is her development generally op? Vocabulary, colours, drawing?

GP today, specialist referral.

yes, how is her development? is she on track or are there concerns too?

Oh my goodness what a worry, keep
Pushing for help OP!

I'm sorry to hear this OP and you must feel alone with getting yourself heard.

We had a similar experience, and I was recommended Sunila Jog. She's a paediatrician Basingstoke area but it's worth getting an appointment with her as this woman is just unique and very special.

I knew quickly when I walked in that she was going to help me and care. I cried in her office from relief that she was going to help me and get to the bottom of it which she did.

She was a flying doctor in Australia but she just has something about her and she was the best decision of my life.

It's worth coming over for a day of full testing if you explain the distance.

This woman is special and she will get to the bottom of it I am 100% certain. Half the battle (if not more) is finding that person that cares and won't give up.

Good luck here is her link

www.spirehealthcare.com/consultant-profiles/dr-sunila-jog-c6050596/

PM me if you have further questions xx

Has she had a sleep study? She might not be getting good enough sleep if she's obstructing.

Oh poor baby. I am so worried for her op. She just doesnt look ok at all. Sorry dont mean to make you feel bad. How are all these doctors not very concerned about her by just looking at her. They need to keep testing to get to the bottom of this. Her appearance is one thing but her lack of energy and what you've described is so alarming to me. Please keep pushing and hope you get to the bottom of this. She looks like such a sweetheart. X

Oh bless her. I hope you get answers soon it certainly doesn't sound right at all :(

Hope you get your little one sorted op.

what happened after the tests in November? did they just send you your way as all was 'normal'? is there something else in the pipeline referral or test wise?

You need to see a paediatrician. Agree the forehead is very noticeable. I would have a google if this can be an indicator for something. From experience, you have to sometimes tell doctors what you think it might be.

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.

We had one of the children seen by genetics and I remember the genetistic looking at DC - their had, feet, ears etc. He also looked at the forehead as he said sometimes there are physical markers for certain syndromes..

There is something going on, you just haven't seen the right people.

have you asked for genetic testing op?
with the bags under her eyes my HV saw that in my dd and talked about fish fingers, ie, allergies to the bread crumbs, but since dd didnt have many meals having this nothing further was said.