Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
Original poster
Larrythelamb84 · 21/06/2018 11:32

Its a difficult one. I work for the NHS so would never "abuse" the system. But our local hospital now has a care navigation system, so they would only send us back down the GP route anyway as they have GP's based within A&E. They are highly likely to say the same as my own GP's have :(
So for the minute, I am just letting her eat anything she wants. Even if that means the odd bowl of cereal or a packet of crisps. Last night I did a sunday dinner, and she just ate the veg, so I suppose its better than nothing.

OP posts:
IMissGin · 21/06/2018 12:59

I’d take her to a&e. You must be out of your mind with worry. If my 6yo now weighed only 2st 3 I’d be taking her on that basis alone.

Original poster
Larrythelamb84 · 21/06/2018 13:07

I cant get through the door at A&E due to the care navigators which would send us to the primary care service located in the same building, who would then refer me back to my GP. My GP isnt concerned about her weight at all, apparently shes petite. But I had to put her back in some age 4-5 shorts which I found at the back of the wardrobe, as her age range were dropping off her! Everything is down to the virus apparently, honestly I'm at my wits end!

OP posts:
Nogodsnomasters · 22/06/2018 13:29

So how long do they want you to wait for the blood test this time now?

Original poster
Larrythelamb84 · 22/06/2018 15:10

They’ve said they can’t do the test until these viral infections have gone.

OP posts:
SnuggyBuggy · 22/06/2018 15:19

I would have thought A&E would just tell you to go to the GP

cestlavielife · 22/06/2018 20:39

Has she been tested for coeliac?

Labtest7 · 22/06/2018 21:27

My daughter was diagnosed with acute lymphoblastic leukaemia at the age of 4. On Sunday it will be 7 years since diagnosis. She had a bad leg and no other symptoms, but our GP wasn't happy, and sent her to A&E. She was none weight bearing so bloods were taken, as they suspected a hip infection. Leukaemia was diagnosed the next day. I don't see why your local hospital A&E are refusing a simple blood test. It's hardly an invasive procedure.

Original poster
Larrythelamb84 · 22/06/2018 22:56

I do hope your daughters ok, i must sound so silly posting this when you’ve been in the real position. But they really won’t do the bloods. I feel I’m just bumping into walls. My GP did offer

OP posts:
Original poster
Larrythelamb84 · 22/06/2018 22:57

Fine needle biopsy, but made it sound so horrific that of course I declined. Everyone around me sees how poorly she is, and how exhausted I am being up every night with her :(

OP posts:
peoplearemean · 22/06/2018 23:14

Please ask for bloods again. Can you see a different GP?

Dodie66 · 22/06/2018 23:30

I would keep going back till you get what you need. See a different gp

Witchend · 23/06/2018 07:39

Barring the lumps in the neck, ds had something that sounds very similar two years ago aged 8yo.
He had most of a term off school because he couldn't stay awake, and lost weight. He was referred for bloods etc. Nothing that could be attributed to it could be found.
And after a term he started getting better, so we stopped worrying mostly. The only thing he's been left with are headaches and a bit more than expected aches and pains.

I think he had a post viral thing which just knocked him for 6.

fluffyblanket17 · 23/06/2018 08:44

My son has had leukaemia, I kind of understand why they won't do a blood test whilst she has a viral infection because you won't get a true result and the results may cause unnecessary worry, that being said, I don't understand why they didn't do one in the first place.

My GP is brilliant and there has been a few occasions I've been worried about my son since he finished chemo and requested blood test and they've not questioned it. They also offered my daughter one when she was unwell for a couple of weeks (I declined and said I'd wait and see how she got on first) I don't understand why they would offer a fine needle biopsy but not a blood test.

How long has she been having these symptoms? When I first started noticing my son wasn't himself, I checked on him one night he was that white I had to check he was still breathing, I panicked and took him straight to the out of hours doctors, he wasn't really symptomatic, I just panicked. Is out of hours an option for you? To see a different doctor?

Labtest7 · 23/06/2018 21:13

Larry she's fine now thank you. In September she will be five years post treatment. Hope someone will agree to the blood test. It's such a minor procedure, and can put your mind at rest.

CoperCabana · 23/06/2018 21:37

Gosh this sounds worrying. A three hour nosebleed alone is a medical emergency isn’t it? I have a bleeding disorder and even then, I am sure they say if it doesn’t stop for 20 minutes, you need to go in? Your poor child and poor you.

CoperCabana · 23/06/2018 21:38

Sorry that sounded more doom and gloom. I meant what a worrying time as opposed to it sounding worrying.

Original poster
Larrythelamb84 · 11/07/2018 22:53

Hi everyone, just to update. My daughter had her bloods done a week ago and today they came back all clear. Massive relief, but also still concerned due to her weight loss. All I can hope now is that this virus starts to leave her alone, and eventually I’ll get my happy little girl back who wants to eat every chicken nugget in sight! Also on the plus side, we saw a lovely locum who advised the NHS did cauterise for nose bleeds which caused significant distress, and with each now lasting approx 3 hours, it looks like we qualify!

OP posts:
Zephyrsinskyatnight · 11/07/2018 23:13

Really pleased about her bloods. Please keep us posted. Hope she gets well soon x

iheartmichellemallon · 11/07/2018 23:14

Just saw your update - very pleased to read that! Glad she's ok & hopefully gets back to full health soon.

peoplearemean · 17/07/2018 00:39

Good news! X

Original poster
Larrythelamb84 · 02/08/2018 22:20

Hi everyone, just thought I'd give another update.

My daughter went really downhill again very quickly and ended up in A&E where they struggled to get her temperature under control. Another full rounds of bloods revealed seriously low iron levels and an infection. A blood transfusion followed, and she is now on iron medication for 3 months, after which point they will review.

She has just finished her ten day course of antibiotics and seems a lot better, but as we are due to go abroad soon they have provided me with two powdered antibiotics and two bottles of sterile water so that I can make my own medicine up if needed. This suggests to me that they think she's likely to go downhill again, although they won't admit that.

Can't help feeling they think there's more going on, but they're not telling me? Or am I just being paranoid??

OP posts:
Frazzled2207 · 02/08/2018 22:23

Gosh that is worrying I suppose my question would be if seriously low iron levels could be a symptom of something else or an isolated problem. Hopefully the latter.
Pleased she is better for now.

Original poster
Larrythelamb84 · 02/08/2018 22:55

I suspect diet Frazzled. Whilst she will try absolutely anything, she's very firm on what she does/does not like. So the high iron produce like tuna and beans she won't eat. And she also consumes lots of full fat milk, which reduces iron intake.

One positive thing to come out of this is my gran. She lives with me and has dementia. On the day my daughter took poorly again, my gran had her laid out, dabbing her head with a cold flannel. She would wake her for her calpol right on schedule. Now my daughter is back on her feet, she knows on the dot what time her iron medication is due and prepares it accordingly. When I'm at work, gran is busy researching diet plans to try not only get iron in her, but to increase her weight. It's like my gran has a purpose again, it's so warming to see :)

OP posts:
Witchend · 02/08/2018 23:01

Larry that's not a likely to go downhill, just a she needs it quickly without messing about if she does get an infection.
I've had that a few times with ds from our GP when we've been going away, because he gets bad ear infections and if he gets one his ear drum can burst fairly quickly. We've only once had to use it.