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Original poster

Suspected Leukaemia

128 replies

Larrythelamb84 · 21/05/2018 18:43

I found some lumps in my daughters neck this weekend. Wasn’t too worried (thought it was her glands), but took her to GP just in case. What he said floored me. It COULD be leukaemia. But it also could be a virus causing her lymph nodes to be inflamed. He found far more lumps than I did, but he won’t order the blood test for another 4 weeks to see if the lumps go down on their own...which would happen if it was a virus. But I’m not sure I can wait that long. She is 6 and otherwise fit and healthy. Is there any way of speeding up the bloods? Any private places I could take her to? Willing to travel anywhere in the UK if it means not waiting (and worrying for) 4 weeks!

OP posts:
TheSheepofWallSt · 15/02/2019 21:02

OP... has anyone mentioned lupus to you?

SnuggyBuggy · 15/02/2019 21:03

Oh OP it all sounds so scary. I hope they get to the bottom of it soon

WheelyCote · 15/02/2019 21:07

This is very naughty of your GP! Id give him a ticking off.

If any cancer diagnosis is suspe ted they have to fastrack to a paediatrician. Be seen within 2 weeks.

Youve not mentioned other symptoms but take her to A&E. Not because it sounds like leukemia but to push a blood test on the childrens ward. This will save you weeks of angst.

This is my area and i wouldnt say do this lightly. If a GP said the same about my children id do the same after giving that gp a bollocking. Id also tell any families to do the same. There are other things it coukd be. Even if it was...treatment is amazing

Gps see cancer rarely. Im cross for you.

myrtleWilson · 15/02/2019 21:14

wheely am not sure you've read all the thread?

Frogsdinner · 16/02/2019 18:33

How’s it going today Larry?

swingofthings · 18/02/2019 10:43

I've just read your thread and can't believe it's been going on for so long and you've been fobbed off so many times.

My understanding is anyone suferring from severe or chrojic anemia, especially amongst children and elderly would have further investigations carried out to understand the cause of the anemia. There are a number of conditions for which anemia is an outcome. Was anemia identified as low iron or something else, such as folate or vit b12.

A deficiency in vit b12 would cause all those symptoms and could be the result of pernicious anemia or Coel8ac disease. It could also be due to a number of blood disorders other than Leukemia.

I'm so sorry for you and your DD that it's been going for so long and really hope they finally find the cause of her feeling so poorly Flowers

glitterbiscuits · 18/02/2019 19:50

@Larrythelamb84 - how are things now?

Original poster
Larrythelamb84 · 19/02/2019 08:55

Good morning, thank you for all your well wishes, sorry for the late reply. We are hoping to be discharged this morning as whilst they still haven't fully got to the bottom of what is going on, my daughter is like a caged animal in here and is ready to go home.

Blood tests showed signs of an infection, so she's had a course of IV antibiotics throughout the weekend. It appears she has an autoimmune disease, whereby her cells are attacking each other, hence the anaemia. She's had a procedure where her blood was washed and then transferred back into her and they're hopeful that this will settle her anaemia down.

In terms of the collapse, this is where the worry still is. She has had an MRI which has been sent to the specialists at our local children's hospital for further review. Whilst they haven't gone into massive detail with me as yet, it appears signals aren't being sent properly from her brain. They've told she will likely have another scan at our children's hospital with some specialist dye which will test the signals. I've been reassured this isn't urgent and I'll receive an outpatient appointment.

So that's where we are at the moment. She seems a lot brighter in herself so the antibiotics and blood have obviously helped. Some things are still a bit of a mystery. All of the women my side of the family are B12 deficient, but I've been told this isn't the case in my daughter.

OP posts:
shishnfips · 19/02/2019 09:10

Poor you and dd op. Have they given a name to her autoimmune disease? Push for a referral to rheumatology.

Original poster
Larrythelamb84 · 19/02/2019 16:40

Hi @shishnfips, its haemolytic anaemia. I can't get a direct referral to rheumatologist as paediatrics are all under one umbrella in my area x

OP posts:
Lumene · 19/02/2019 18:38

Glad they are now on the case with your daughter.

Original poster
Larrythelamb84 · 20/02/2019 21:37

Well we're back in hospital 😥. She collapsed after a visit to the cinema (she was perfectly fine before we left). Her temperature was 39 when the paramedics arrived and it took a long time to come down. It's viral meningitis. Honestly, one thing after another 😥

OP posts:
oldowlgirl · 20/02/2019 21:45

Oh Op, what a nightmare. Stay strong.

Nicecupofcoco · 20/02/2019 21:55

So sorry op, hope your daughter is OK. I don't have much advise, but keep pushing for answers.
Hugs to you. Flowers

Schuyler · 21/02/2019 20:15

Poor baby and poor you. It seems your daughter has a lot going on and you’ve been super patient but this is ridiculous. I don’t understand why theyre dragging their feet when your daughter has clear signs of being poorly.She needs proper help and she needs it now.
Take care and look after yourself too. Flowers

Original poster
Larrythelamb84 · 21/02/2019 20:37

Thanks @Schuyler today has been tough.
It's half term and I had promised the girls a treat today. It's actually been booked and paid for a while. But obviously now we're in hospital, so my elder daughter has been shuffled between various relatives. After a bad night with her sister, eldest called to ask if I would be coming home to take her on her treat. I couldn't, and I could feel the disappointment in her voice.

It's true I have spent a lot of time on her sister, she's been up and down a long time. So, feeling a little shitty. My mum offered to bring her through to the hospital to visit us both but she declined. She's only 10 and must be feeling very neglected 😞

OP posts:
UnicornRainbowsRain · 21/02/2019 21:03

Jeezzzooo just sped read your thread. You sound like an amazing Mum.

CoperCabana · 21/02/2019 21:25

I am so sorry to read this update. And your poor other DD. I hope you get some answers soon. I am worried about DD1 at the moment who has had a blood test this week. I have been so stressed after just a few weeks so I can’t imagine how tough this is for you.

Original poster
Larrythelamb84 · 21/02/2019 21:53

Thank you @UnicornRainbowsRain it's hard to get a balance at the moment but I'm trying my best with them both. And @CoperCabana I hope you get the results quickly, it's a very nerve wracking time x

OP posts:
CoperCabana · 21/02/2019 22:06

X and Flowers to you Larry

ThelmaDinkley · 21/02/2019 22:18

Just read your thread and want to wish all the best to you and your dd. Hope they get to the bottom of it. X

HollowTalk · 21/02/2019 22:25

What a terrible time you and your family have had. I hope everything goes well for your little girl.

swingofthings · 22/02/2019 10:05

Poor you, your DD and other children. What a lot of stress and pain. At least you and her are now being taken seriously. Let's hope she recovers, quickly from the meningitis and will then receive the proper ongoing care to sort out the anemia.

GiveMeAllTheGin8 · 06/03/2019 15:05

Just read this as saw the link on the other thread.
I honestly can not believe all you’ve had to go through with your dd while pushing for tests.
Is there any way you can go private and get her completely checked out? I’m in Ireland so not familiar with the UK”s private health system .
I really wish you all the best Flowers

Original poster
Larrythelamb84 · 06/03/2019 18:06

Hi @GiveMeAllTheGin8 none of the private hospitals will go against the GP. I tried to get her bloods done privately and that was a non-starter. It's literally been a waiting game with her and very very frustrating.

At the moment she is happy, at school etc but still suffering from sudden unexplained collapses which I hope they can look into on Friday.

OP posts: