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

If you can afford it, google private Paediatricians in your area, check reviews and call some in the morning. You can usually get seen in a couple of days. Probably a couple of hundred for a consultation but at the very least they can give you a list of tests they would run and a letter stating who she should be referred to that you can take for the GP. It’s disgraceful you’ve been left like this. I’ve been treated similarly by GPs for years but less concerning symptoms, and it’s soul destroying.

I'm watching this thread with interest, as I'm in a very similar position.

I first posted on here August of last year when the doctor mentioned leukaemia but then wouldn't do any blood tests as he wanted to see how things went. I would have literally travelled the length of the country to get her a blood test, so it's good that they have done this for you already.

Roll forward to today, and I'm still no further forward with my rather poorly 7 year old. She's just had a bout of viral meningitis and was hospitalised so I was hoping whilst we was in there we would get to the bottom of what's going on, but no. We did however leave with an urgent referral to paediatrics, which is happening on Friday.

To summarise with my daughter, she's 16kg (originally 19kg in Aug 18), had chronic anaemia but now resolved, but now suffering sudden collapses with no known cause. She complains her heart hurts, legs are painful and wobbly and her blood pressure is terribly low. It's been a long road for us so I can totally sympathise with you. Big hugs x

@Larrythelamb84

I'm shocked at your GP... blood tests are normally the first point of call for unexplained weight loss and black outs. I'd ask for a second opinion!

@lablablab we did get them eventually, but it took 8 GP visits to get them. That ruled out the leukaemia and identified anaemia, but all these months down the line she's still suffering black outs, chest pains etc. She's in a very similar position to the OP.

Chrohns? I'm not sure how you spell it but my friend who is an adult had mostly these symtpoms apart from weight loss and diagnosed with chrohns disease. Was on tablets for something else that made them put on weight

I know a couple of people with Crohn’s and it sounds very similar to their symptoms, including the mouth ulcers. Really feel for you, it must be so frightening for you x

She sounds like my son before he was diagnosed with type one diabetes. I'm only hoping that this would have been picked up as part of the original blood test. Has she gone down hill today? Has she been going to the toilet more? Is there a fruity smell coming from her? Any problems breathing or sickness? Once I twigged what it was I rushed him to A&E and he was admitted as an emergency. I'd taken him to the GP several times previously. Children die from undiagnosed diabetes.

LarrytgeLamb that is crazy that they would say something so scary then not even do any tests your poor DD sounds in a worse state than mine, what are they doing for her now?

I’m going to take a list of all these possibilities in with me tomorrow - I’m slightly worried that everything that’s been suggested is a disease or a condition that she may have to live with forever but all the more reason to get cracking and get diagnosed ASAP

t1mum Mo none of those symptoms, she hasn’t gone downhill today I was prompted to post as her teacher had rang me telling me they were worried about her

Sorry the post is on the other page now and I can’t see it, but the PP with a niece with a blood condition she doesn’t seem to have matching symptoms besides the weight loss really but I’ll still put it on the list thankyou is never even heard of that one

Off to google Crohns now
I’m so grateful to everyone with experience helping me with some suggestions

Oh yes she does have all the symptoms of crohns too, and that’s the only one that mentions mouth ulcers - she literally could have any or all of the things mentioned !

Ok, to assess for type one diabetes the GP should do a finger prick blood test and should also test for ketones (likely urine test for that). I would also ask about the possibility of other autoimmune disorders (weight loss, hair loss and mouth ulcers are also signs of lupus)

@StickyShoess bloods were done in September which showed chronic anaemia but nothing else. But even after 6 months on iron meds she is no better. We've been via A&E 3 times in the last fortnight for the passing out, but each time she is fine by the time we are seen so we get referred back to the GP. Our GP has now done an urgent paediatric referral and we will be seen on Friday so hopefully we will be sent for a variety of tests at that point.

Who are you seeing tomorrow? The GP or a paediatrician?

@t1mum3 lupus is on my mind for my daughter. She has pains in her legs, hands and fingers. Complains of chest pains. Previously diagnosed with photophobia so it is a possibility for my daughter.

Ask for an urgent referral to see a paediatrician, a specialist in children’s health, rather than a general practitioner. I wouldn’t wait for the GP to do any further tests, get your child assessed by an expert. I am not bashing GPs I just think this has gone to far and needs addressing quicker than a GP can facilitate.

And would a finger prick and trine test have instant results t1mum? I will ask for that to be done tomorrow

Oh gosh Larry that all sounds so so worrying, hopefully the paediatrician will be able to help more

I’m going to the GP tomorrow just to remind them that we’re still here really, but also because one of the blisters on her lip is possibly infected, I took her to the pharmacy today and they said take her to GP instead, so I’m just going to go into it all while I’m there and try to move things forward now
I haven’t seen any doctors since she was sent for a blood test in December, we went for 3 tests at the hospital with no luck getting blood out, then it’s taken me this long to sort out someone else to successfully get blood, then she needed a repeat and I waited a month for another referral, so I haven’t actually seen anyone about her symptoms for months

Yes, the finger prick test would be able to give an immediate positive result if in the late stages. I'm sure they will have done a random glucose as part of the full blood work before but it's worth asking for again as you sometimes get "in range" numbers during the earlier stages. Thirst and frequent urination are the classic symptoms of type one, but polyphagia (constant hunger), weight loss and infected sores on the face (as well as crushing fatigue) were my son's symptoms in the weeks/months before. I definitely think you should ask them to rule this out - don't let them insist you wait for the lab blood test result as that's not the protocol they should be following. If it's not T1D, then they can rule it out there and then, but if it is, she should be referred immediately to the children's diabetes team at the hospital (within the hour).

Oh brilliant I’ll definitely get that done tomorrow thank you

Good luck OP. Report back on how you get on

@Larrythelamb84 A friend of mine suffered from chronic anaemia for YEARS and was eventually diagnosed as coeliac. Chronic anaemia was literally her only symptom - she had none of the gut issues you’d expect. That and the weight loss would definitely mean they’d need to rule out coeliac, IMO. Hope you get some answers because it must be so terrifying and so frustrating for you.

Yes I will do will do glitter this thread has been so helpful I’m so glad I posted

Also we might not be able to medically help you but it is so terrifying and isolating when your child is sick let us be your support and friends. Xx

I was going to say coeliac disease. Mouth ulcers,weight loss, being tired and emotional all symptoms.

Good luck. And don't be afraid to be a 'pain' to get your daughter help.

Many of those symptoms sound like hyper-thyroidism which is manageable. I hope you get answers ASAP. I appreciate how worried you are. These are for you both

I literally could of write this 5yr old dd has weight loss, hair loss, sunken eyes, extremely tiered all the time. Hadher blood test Monday so we're waiting for results we saw doctor 4 weeks ago. He wanted to weigh her in 4 weeks. She gained a bit of weight but was not happy with her pale complexion suken eyes and obvious hair thinning so sent for blood test and here we are. I hope you get some answers op I will keep checking in

My first thought reading that is diabetes.

Other thoughts that followed as I continued to read the thread:

Addison’s disease (ask for her cortisol levels to be tested at 9am - it’s a rare disease so they’re unlikely to test unless ou ask for it)

Thyroid problems

Crohns diesease either with or without coeliac disease.

Good luck.