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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:
Original poster
Larrythelamb84 · 02/08/2018 23:25

That's reassuring witchend, thank you. I didn't know they gave them out like that. I've certainly never had to prepare meds myself. Sounds strange, but I was relieved to finally get my hands on some antibiotics! Help to clear out her system!

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Original poster
Larrythelamb84 · 12/02/2019 22:38

Hello everyone. I'm back again.

Since I posted back in August, all sorts of things have happened with my daughter. She was diagnosed with chronic anaemia, and spent 6 months on Syrton, coming off that only last week. They cauterised her nose to help with the anaemia, which was a success.

A month ago she started complaining of chest pains. Bit of a nightmare trying to get in the doctors as they wanted me to take her to A&E and I didn't feel that was justified. Subsequently she was sent for an ultrasound which found narrowing of the heart valves, likely to be caused by an autoimmune disease. So now we're under cardiology and awaiting our next appointment.

Scroll forward to today. She's now complaining of trembling arms and legs, to the point she is laying on the floor because her legs are "too wobbly" (her words), to stand. I can see her hands shaking slightly, but can't see the legs. She has very inflamed and painful lymph nodes in her neck.

Purpose of my post is, I'm really at a loss as to what could be going on with her. I obviously need to go back to my GP tomorrow to explain the latest development, meaning we will need to queue outside the surgery at 8am. I just want her to be happy and healthy, but it's just one thing after another without any answers 😞

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JazzyBBG · 12/02/2019 23:00

No words of wisdom but keep pushing she needs you x

oldowlgirl · 12/02/2019 23:23

Have they looked at Guillain-Barré syndrome? It sounds similar in some ways (but not all) to a friends son when he was first diagnosed & he's now made an almost complete recovery.

I hope she's ok & you get to the bottom of things.

Original poster
Larrythelamb84 · 13/02/2019 09:42

No I hadn't thought of that @oldowlgirl but i think you might be on to something!

All of my practices are closed today for staff training, but we have an out of hours appointment at 9:30pm so I'll push for some tests.

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oldowlgirl · 13/02/2019 19:48

Good luck Thanks

Suzie81 · 13/02/2019 19:52

You poor thing.

You say she's coming off some medication after six months. Could it be withdrawal symptoms?

beautifulgirls · 13/02/2019 20:03

I'd be asking for a paediatric referral to a major children's hospital for a full investigation with them. They can further refer within their service if needs be.

BishopBrennansArse · 13/02/2019 20:08

I can't believe you've been left worrying so long, I hope you get answers soon

Original poster
Larrythelamb84 · 13/02/2019 22:10

Our out of hours provider wasn't much help 😞. They said she needs a full range of tests, referring for paediatric review, but they cannot do the tests of make those referrals. I have to go back and see my own GP. If I could have got an appointment with our GP, I would have needed to go to out of hours. I feel like I'm going around in circles.

Interesting you say that about withdrawals, that did cross my mind but I forgot to mention it this evening. She's gone from having 10mls of iron every day, to nothing.

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Girliefriendlikescake · 13/02/2019 22:17

Anemia could cause the symptoms in her arms and legs, when were her bloods last checked? Have they ruled out things like diabetes? (Apologies i have just skim read the thread.)

Must be so worrying for you op keep going back to the Drs, unfortunately your Drs don't sound great is there any chance of changing surgery?

Original poster
Larrythelamb84 · 14/02/2019 21:57

I'm really saddened, scared almost. My daughter collapsed tonight, hit her chin on the way down so lost a tooth. She was back on her feet within seconds, but myself and her sister were just looking at her thinking what on earth had just happened. Called the practice, they ask to bring her in which I did. And they find nothing wrong, say she must have fainted. They have absolutely no idea what's going on, so we have a routine referral to paediatrics.

Somethings really not right, but every professional I've seen doesn't seem worried.

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oldowlgirl · 14/02/2019 22:22

Can you take her to a&e? So worrying for you Op.

Original poster
Larrythelamb84 · 14/02/2019 22:34

You can't get through the door @oldowlgirl Our local A&E has a triage system whereby unless you are dying, you don't get it. I've been a huge supporter of this, I think it's a marvellous way of diverting primary care patients away from emergency services, but I can be a right pain in times like these!

If I took her up, they would divert me to the out of hour GP, who we've already seen and couldn't help x

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oldowlgirl · 14/02/2019 23:31

What a nightmare. So sorry.

Girliefriendlikescake · 15/02/2019 19:36

When my dd fainted over Christmas the G.P did an ecg and took bloods, I would go back and ask for these to be done.

Frogsdinner · 15/02/2019 19:40

Can you call the paediatricians secretary to bring the appointment forward, sounds so stressful for you

Original poster
Larrythelamb84 · 15/02/2019 19:47

I called the surgery today after she passed out again. Doctor gave me a doctor and sent us straight to A&E (finally!!). Bloods came back with high white cells, blood pressure was very low and she was still in pain with her legs. As it was Friday afternoon and our hospital is a general hospital rather than a specialised one they're keeping her in for observation and further investigations. We finally might get somewhere!!

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Strugglingonagain · 15/02/2019 19:55

So sorry for everything you're going through. I hope you get some answers soon xx

Lumene · 15/02/2019 19:55

Glad to hear that Larry hope they can help her.

oldowlgirl · 15/02/2019 19:57

Another who's hoping you can finally get to the bottom of things!

Lumene · 15/02/2019 20:03

An awareness raising thing came up about this on my FB feed and I thought if this thread because of the nosebleeds and red spots. It’s likely completely irrelevant but posting just in case. It is rare and seems to be very much manageable if diagnosed. Like I say probably not relevant but link is here: rarediseases.org/rare-diseases/hereditary-hemorrhagic-telangiectasia/

GoodStuffAnnie · 15/02/2019 20:47

I haven’t got any advice just wanted to say I’m thinking of you xxx

HJWT · 15/02/2019 20:53

@Larrythelamb84 good luck sweet hope you get some answers asap and things start looking up!!

CottonSock · 15/02/2019 20:59

What a long and worrying story. I hope you get some serious investigations soon