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

What a crap GP but God bless the NHS! I hope she continues to improve.

Your poor daughter, I do hope she will very soon be feeling much better, what a terrible experience, your GP sounds completely negligent, quite unbelievable.

Shocking from your doctor tbh. Now she's getting the right treatment she should bounce back quickly.

Bit random but try looking in to celiacs disease

It must have a hugely traumatic experience today, but I'm so glad that you now have a diagnosis and it is something that can be managed x

I'd be very annoyed with your GP. OP - what a long road for you and dd.

So glad you have a diagnosis. I would definitely put in a complaint to the practice manager at the surgery. It’s a disgrace

So very relieved your DD has a diagnosis and is receiving the treatment she needs. My son was born with hyperinsulinism (basically the opposite of T1 diabetes) and now has Ketotic hypoglycaemia. Make sure they give you ketone test strips as well as blood sugar test strips, hospitals usually give out the Freestyle Optium Neo which can test both and urine ketone tests are nowhere near as reliable. The fact that she’s had DKA should mean they are happy to prescribe these - if not, you can buy them (at great expense sadly, think it works out about £2 per test strip). Abbott will send you a free Frestyle Optium Neo monitor if you ask for one.

When things settle down a little it’s worth looking at continuous glucose monitors - some CCGs will fund them and others won’t and you have to pay privately, but I suspect it’s much easier to get funding with T1 than it is for us.

It will be a big learning curve but she’s going to feel so much better now, and most importantly you will learn to manage it together.

@StickyShoess "even with the blood results this morning they weren’t going to test her urine or a finger prick and it’s only because of this thread that I asked them to, so if I hadn’t she could very well have been even more seriously ill"

I'm so glad I encouraged this. GPs miss type one diabetes so frequently and your dd's story is very close to my ds's.

You know you've got a road ahead of you but I'm so so glad you caught it before it became a different scenario. Well done for listening and insisting with the GP - you are already a warrior type one mama.

When and if you feel ready, pm me and I'll link you to some groups. A huge hug to you and your dd from me and my boy.

What a stressful day for you both but so pleased you have answers and you are with the experts in hospital. Wishing you and your daughter all the best for the future. X

So pleased things are under control now. Shocked the GP didn't pick up on it though!

I’m utterly astonished at the lack of care provided by your GP. I really hope you submit a complaint letter. The hospital hasn’t covered itself in glory either.

Lots of love for the road ahead

Gosh! I'm so pleased you've got a diagnosis you can work with, your poor dd.
Shocking that the gp missed the signs earlier though.

the GP actually said to me this morning ‘oh you never mentioned you thought it was diabetes’

On what planet do you need to go to your GP self diagnosed?! It's shocking treatment and I would also urge you to lodge a complaint. The GP has been so cavalier towards your DDs wellbeing. Type 1 diabetes is so very serious without treatment. What if it had been something worse!

You are an AMAZING mother. You did this. Not the GP. You did your research and advocated for her and now she's getting the treatment she needs. I'm so pleased she's been looked after, poor little thing. It's wonderful to hear that she's perking up.

That GP needs to be hauled over coals as far as you have the energy to take it. Your DD could have become extremely ill quickly. It’s only thanks to you she didn’t

I was reading this to my family of four medics and every one of them said you should file a complaint about your GP when you have the headspace to do so.
Detail all her symptoms. How many times you have been. What tests have been done. And the GP’s comment about diabetes.
Attach whatever you can as proof. You can also ask for her medical notes I believe?

I'm no doctor but the symptoms should have been obvious to the medic in charge. I would make a complaint as it sounds like a retaining issue

Poor dd, at least she can get on top of it now and it will be second nature by the time she reaches high school.

Whilst the gp hasn't been as reactive as they could have been, they did reorder the bloods as they weren't happy with a negative result and as soon as they got the results back acted on them. It wasn't the op demanding a urine test that got the wheels in motion, the gp was already there. Just a different perspective, the diabetes comment was inappropriate though.

Good lord sorgis. Her daughter’s symptoms have been screaming diabetes for months. And I’m not a GP and I know that!!

I disagree - this poor little girl has been sick for months. A finger prick and urine dip takes seconds and costs pence, and when she wasn’t improving they should have at least done this. There’s no excuse for missing this when she was so unwell - maybe if it had just been one appointment but it wasn’t.

I am so glad your DD is getting the help she needs and best of luck adjusting to it all, it must be quite a shock.

I am also appalled at your GP's inaction and comments and would urge you to consider a formal complaint when things calm down.

So sorry your little girl has been ill. Truly shocking treatment from your GP- I think one of the first comments on here was from a GP saying it sounds like diabetes!

I hope this thread will help others too. I know I’ve taken on board a lot of the info if my DD started to show symptoms (my mother has type 1).

They also have a lot of easier ways to help control diabetes now, especially for children so I know it’s a very hard diagnosis but you will be okay.

Thought it might be worth posting this image showing the signs of type one diabetes. Half of diagnoses are in children, but adults can also be diagnosed. Minutes, hours, days all count when you are dealing with undiagnosed T1D. There are amazing GPs out there, but the OPs situation is very common. Many GPs are unaware that the protocol for T1D diagnosis is different to T2D. A finger prick blood glucose test there and then, and screening for ketones are absolutely essential as it is a time critical, life threatening situation. If you have any suspicion of type one, do not let your GP fob you off by referring you for lab bloods to be taken at a later stage or suggesting a fasting glucose test is necessary. These are secondary tests but the GP needs to test then and there. Undiagnosed DKA kills within a very short period of time. OP, once again, huge well done for insisting on the appropriate test without delay and I hope you and your little girl are doing ok.

@stickyshoes
Firstly thank goodness.. Your dd is going to be OK.
Secondly... And as a doctor I rarely rarely advise this on mn... But you should write to your gp practice and ask for explanation. A gp should have tested her immediately for diabetes with the original symptoms of weight loss. Or at least considered it and asked lots of questions like does she drink a lot, does she pee at night etc.
Not even considering it as a possibility is very poor indeed and I would then wonder what else is being missed by this doctor.
I work with poorly performing doctors, looking at their ability to practice safely and their registration with the doctors regulators. A doctor missing a barn door diabetes in a child is very serious. Your dd could have died.
That said... This is presuming that you what you describe on here is what happened with gp.
I don't doubt you so please for other patients sake raise this with the practice and the regulators... Once you feel up to it.. Priority is getting your dd better and learning how to manage her diabetes

Well done to you theredjellybean . I'd noticed that it was something that you'd picked up on immediately upthread in one of the earliest posts.