What could be wrong with DD7?

[StickyShoess]

DD1 is 7 and I’m really worried about her

She started losing weight around last summer, I thought she was just growing at first but she’s now lost so much she’s almost unrecognisable, lots of people have commented and asked what’s wrong with her
Her appetite has massively increased in that time and she now eats similar portion sizes to her Dad
Her hair has also been coming out a lot more when she washes or brushes it

I had her weighed at the doctors over a few months and she’s still actively losing weight so they’ve sent her for a blood test

After several failed attempts we finally found a lovely paediatric phlebotomist who got some blood out of her, her blood was very dark and thick and slow moving it took about 10 minutes of just sitting with it in her arm to fill 1 little bottle thing, it was so weird it was like treacle, I don’t know if that’s normal but I’ve never seen it before
Anyway that came back mostly normal except for slightly raised potassium levels, so they wanted to do another one, she had this yesterday and I’m still waiting for results

But in the mean time she’s now starting to look very pale and has got blisters? Cold sores? On her lip, she’s never had this before
I’ve also noticed things like hugs and tickles seem to hurt her now, but that’s possibly just because every single bone is sticking out now where she’s lost weight

She’s very emotional and is crying at the drop of a hat, if you ask what’s wrong she doesn’t seem to know
Her teachers have also raised concerns about her saying she’s not herself, seems quiet and tired and she’s been emotional in school, her teacher is worried about her

I just don’t know what to think, it’s been going on for so long because we were weighing her and waiting for blood tests and in the meantime she’s getting worse and worse

Has anyone any idea what it could be?
I’m so worried I just can’t stop thinking about her

Don't want to read and run. How long before you get the blood results. I'm sure you are very worried. Your poor child will be very confused. Take care xx

They said around 5 days for results so I’m going to chase them on Friday and then book an appointment back at the gp to see what’s next
I just literally have no idea what’s going on

And no-one seems to be giving me any clue
(Pressed send too soon)

I am a gp and would be concerned about a child with that story.
First thought would be diabetes.
I presume though that has been tested.
If bloods normal again I'd ask for referral to paeds.

I’m not sure if they’re testing for diabetes, she said they’d do a full blood count and test liver and kidney function - would this cover diabetes?

Did they test thyroid? Quite a lot of the symptoms would be consistent with hyperthyroidism, though I would imagine that would have been checked already. Poor you and poor her.

Coeliac disease? It can cause mouth ulcers and weight loss. It also causes vitamin deficiencies which can lead to a wide variety of other symptoms. And you can feel hungry because you’re not absorbing the food you’re eating. It’s worth doing a blood test to rule it out imo.

I’m not sure what they’re actually testing for, tbh I thought the results would come back that she was anaemic and/or deficient in some vitamins and it’s be a case of supplements and that’s that so I didn’t ask specifically what they were looking for
I just wanted to go back to the gp a bit more informed of possibilities just in case the bloods are fine again
Thankyou for the ideas they all seem to fit in with her symptoms, particularly coeliac after a google

Thyroid and diabetes were the first things that came to my mind, has she been referred to a paediatrician?

No I’ve not even had much interaction from a GP yet, just waiting on these blood tests really
Ok after another look I’m now thinking diabetes looks the most likely
There are symptoms on the list that she has that I hadn’t even clocked as a possible issue - like the drinking, she’s just always drank loads and loads of water so because there’s no change I didn’t realise and also (tmi) she gets quite a lot of discharge in her underwear, and a symptom of diabetes is yeast infections, so I’ll go and get that checked out - I thought that was just possibly hormonal

Make an urgent appointment tomorrow and ask them to check her blood glucose - the pharmacy may do it, but often they won’t with children, you could call and ask. There is a blood test that gives a more accurate picture since a finger prick is just a snapshot, but I’d definitely get her to the doctor ASAP to discuss. When did you have the bloods taken? My recent ones came back the same day.

I’m horrified your GP has let this go on so long without lots of tests.

Bloods were taken yesterday, they said they’d be back in 5 days
We have a new symptom that she’s just mentioned - apparently her bum bleeds when she goes to the toilet?? She’s just been and I’ve had a look, there was a significant amount of dry blood around her bum

I will definitely be back at the go first thing

I first took her in late September Sink nobody seems to be in a rush and I find if I’m not chasing appointments and talking between different people that should be talking to each other then nothing’s happening - it is so frustrating!

GP* not go

I just feel like everything is wrong with her, I literally feel sick with worry

Thanks all

Your poor DD and poor you. My DD has a swollen knee and had to have blood tests and I am worried sick with that so can’t imagine how worried you must be. I really hope you can get a fast track appointment to a specialist and get some treatment sorted for her soon.

Good luck, op. How worrying for you.

I hate reading about poorly children when their parents are repeatedly taking them to the doctor and being sent away, it's disgraceful. I really hope you get some answers op, ring up in the morning maybe the bloods will be back, they usually are available day after here, unless they are being specially tested for more unusual things.

Oh, she doesn’t sound well at all. I wonder if the bleeding could be linked to coeliac? Another possibility would be anal fissures due to constipation, but if she drinks lots that shouldn’t be an issue.

Hi
Your poor DD and poor you.
So very worrying.

I was diagnosed with Addison’s Disease after losing a lot of weight, having low blood pressure and blood tests showing raised potassium and low sodium. Also had other symptoms such as tanned skin.

You mentioned slightly high potassium so may be worth checking with GP. It’s a rare condition and often misdiagnosed until patient gets very ill.

Good luck getting answers.

Poor DD and poor you. I really hope you get some results asap. Your GP is not taking these symptoms seriously enough imo.

What are her energy levels like?

I'd be worried too, OP.

The behavioural issues are probably a result of how she's feeling physically, at this age. So I would focus on the physical symptoms.

Weight loss despite a healthy appetite, hair loss, cold sores/blisters sounds like a reduced immune response and a lack of vitamins/minerals because of reduced nutrition in her organism. So she's eating food, but her body isn't getting energy or nutrients from it. Hugs and tickles hurting more could be because she has less flesh on her bones, or it could be because she's actually more sensitive now (my DD has hardly any flesh on her bones, but she's still strong).

In your shoes I'd be going absolute hell for leather with a paediatrician on this. You need a good, single doctor to methodically go through all the tests. It could be something small that needs tweaking. It could be something more significant. Pay for it privately, if you can.

Really feel for you, OP. I really, really hope you can push for answers wherever you can. Don't let the doctors lead you. You HAVE to push.

I had a health scare with my dd last year. It was terrifying and I didn't feel satisfied with the progress of the diagnosis. I went private in the end. I paid for a consultation and blood tests. I got the results the same day!

All signs pointed to something very serious but it wasn't and it was easily treatable, so try not to worry. I know it's hard...

Really hope you get some answers soon. Keep asking, keep ringing, keep pushing, keep on it.

Ah thankyou you’re all lovely
I’m trying not to let her see that I’m worried about her but I am getting worse at hiding it

It’s crazy that we have to push and push to get people to help do their jobs when it comes to children, but I will stop waiting for the doctors to lead as you said and be a bit more pushy from now on

The blood thing instantly made me think of my niece who has polycythemia vera.

Does she have any of the symptoms listed here?: www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=90&ContentID=P02398

I'd make a list of things that match her symptoms and ask the GP to test for them or find out what her GP has been testing for.

That's a great idea. It'll keep you busy too!
Write a list of everything suggested on here and ask the GP if she's being tested for all these suggestions too. It might just trigger a lightbulb moment or help pinpoint a diagnosis. Best to cover all bases.