Symptoms of childhood leukemia

[ThePaleGreenPants]

I’m really worried something serious could be wrong with my daughter. Symptoms started over 3 months ago and have progressively gotten worse. Was in a&e 2 weeks ago because of her dizziness and back pain.
doctors don’t think anything serious is wrong but the pain seems to be worse at night. She wakes up with dizziness and pain in lower back, complains of shaky arms and legs and says they feel weak but aren’t actually weak if that makes sense, that’s what the docs are saying.
waiting 2-3 months for an mri to be done on her lower back but I was up till 2 in the morning with her saying she didn’t feel right and couldn’t sleep bc of the pain in back, and dizziness and feeling weird. Sorry for the long post, just wondering g if anyone else’s child had these symptoms and what was the outcome. Doctors keep saying she’s not showing any red flags

I think I'd find the money for a private scan to be honest. Put my mind at rest.

Hi OP I’m a GP. You don’t say how old your daughter is? Makes a huge difference as to how worrying these symptoms are/if they count as red flags. They likely already did a blood test for a full blood count at A and E which should show up something like leukaemia anyway. You could check about that if not sure and ask them to do this if not. Has she had any X-Ray or scans of her back?

If your daughter is quite young and she’s not sleeping/waking up with the pain then this in itself should be counted as a red flag (night pain). To be honest back pain bad enough to wake someone up from sleep should be taken reasonably seriously at any age but especially in old and young people.

https://www.bsuh.nhs.uk/library/wp-content/uploads/sites/8/2020/06/Paediatric-Guidelines-Backpain.pdf

Oh sorry I missed that she is waiting for an MRI. Did they do an X ray though?

She’s 8, started getting back pain a few months ago on and off but last few weeks seems to have gotten worse. Woke with it yesterday morning and was bad last night. Doesn’t go away now and it can also wake her from her sleep, same with dizziness. She says her dizziness was gets worse with the lower back pain. No X-ray done.
did bloods but that was months ago

I just don’t know, all the docs also keep saying they don’t think the back pain and dizziness is linked….I just want to know what is going on, it’s just so hard when she’s up at night upset, in pain and so dizzy and I can’t do anything to help.

Oh so she’s still quite little. I’d be a bit worried about persistent (rather than on and off) back pain in a child that age especially if it’s waking them from sleep.

Much less worried about the dizziness and weak/shaky feelings in arms and legs which could be something or nothing, especially if she’s been examined by a doctor which it sounds like hopefully she has, more than once from what you say (I assume she has definitely seen a doctor and not a physicians associate or similar?), and there is no actual objective weakness. I’d wonder about some of that potentially being anxiety/stress type issues, any recent stress/is she an anxious sort of child generally? Anything she might be worrying a lot about?

Any family history of rheumatoid arthritis/lupus/that sort of thing?

Was she seen by paediatricians at A and E do you know? Or just the general A and E doctors? Who has organised the MRI? GP? Paediatrics? A and E?

A 2-3 month wait for an MRI is quite a long time for a child that age with persistent back pain already going on for a few months, I suspect that wait is a “this is unfortunately how long the waiting list” is thing rather than a “we don’t think this is anything to worry about” thing.

If you have the money as per a pp you could look at a private MRI scan and/or indeed a private paediatric opinion.

Another option would be to say you’re really worried and ask your GP to refer her on a “2 week wait” (this is something the government brought in to speed up investigations to rule out cancer where there are symptoms that might suggest it) paediatric referral. This is easier to achieve in some areas than others (locally we have to call a senior paediatrician on-call and get them to agree before we are allowed to send the referral and they sometimes refuse) but may be worth a try to speed things up. You should emphasise the fact that her back pain is persistent and frequently waking her at night and quote the NICE guidelines that these 2 features count as red flags for urgent referral.

https://cks.nice.org.uk/topics/developmental-rheumatology-in-children/management/back-pain-in-children/

On the face of it I agree I think it’s highly likely that lower back pain and dizziness are linked, especially if her full blood count is normal and she is not anaemia with normal white cell count. If you take out the back pain aspect of it I’d definitely be thinking more along the lines of a stressed/anxious child.

I think try to be as reassuring to your child as possible while you try to figure out with the doctors what is wrong, as kids can pick up on their parent’s anxiety and start to obsess over their symptoms (or occasionally overemphasise them for attention etc) which makes the whole thing seem worse and worse. I understand that’s challenging when you are actually worried!

Also if bloods were months ago I’d ask for them to be repeated. Maybe no need for an X ray at this stage if they can get her seen within 2 weeks by paeds on a 2 week wait, otherwise I’d ask for that too (it is quite a bit of radiation and not as detailed as an MRI which may be why they’ve previously held off).

Ask them to check vitamin D levels, calcium and phosphate, ESR, CRP as well as a FBC.

Thanks so much for that info, she has been seen by 3 paediatricians, A&e doctor and gp.
I know they are all doing what they can, it’s just hard to not have answers.

Any family history of rheumatoid arthritis: my dad had it in his early 20s.
one doctor did mention the mri could pick up something if it is anything like that.

she is getting her vitamin D levels checked I know that.

the last bloods that did come back the allergy level one? I’ll have to have them print out results so I can check again but the doctor said the allergy level one was slightly high which now makes me think could it be she’s having too much gluten which could be causing these symptoms? I know she has an intolerance maybe she’s been having too much, which I did mention but the doctors did say that was highly unlikely…..but I do wonder so I have today took her completely off gluten. I thought I could at least try until the MRI scan and see if it makes a difference.

I am not a doctor, but do have childhood cancer experience. It does not sound like
leukaemia where the symptoms seem to be constant infections and illness, bruising and night sweats. It is also picked up via blood tests which presumable have been done?
However, and I do not mean to be either patronising or alarming, children get other types of cancer too. It sounds mad now but I thought ‘leukaemia’ was synonymous with ‘childrens cancer’. It isn’t. There are multiple types of childhood solid cancer and pushing for a scan is the best way to put your mind at rest.

Hi OP. As others have said, the pain being bad enough to wake her up at night is something that needs urgent investigating. @Britneyfan has offered some good advice and questions to ask. Personally, I wouldn't dismiss the dizzyness or automatically put it down to something like anxiety.

If you can afford a private scan, I would do that. Ask the hospital that is treating her if they offer private services and if she would be seen more quickly privately within the hospital. (It's easier than searching the internet for what you hope will be a reputable private provider.) I would also book her an appointment with an ophthamalogist.

I also second @Oxonc3 - if you feel something is not right, push for prompt investigation.

Thank you all so much for giving me your time to respond.
I can now feel happy to say I don’t think it is cancer, which I am very grateful to God for.
I have joined a celiac forum and now coming to think, her back pains, dizziness and shaky legs and arms are coming from what she is eating.
I did raise this question with the doctors a few times but they kept telling me no.
Ive taken her off gluten the last 2 days, which she was already off most but not all, and I can already see an improvement. I know it’s a bit early, but I am going to keep up with it and see if these symptoms are coming from gluten.
There was a point where I really thought something was truly not right and it was very scary. It’s so hard when you don’t have answers, but I’m going to stay positive and keep going with her diet and hopefully will see even more improvements. I will keep you all posted, so if anyone else every finds themself in this situation maybe it can give some insight for them.
Hope you all are having a lovely weekend and will keep you all in my prayers for the support you have given me. I am so grateful 😊🙏

Hi @ThePaleGreenPants
How is your daughter now?

Hello. I’m in such a state of anxiety. My toddler is 2 years 3 months. Started nursery in January, before that he was never poorly so of course being exposed to lots of germs he’s bound to get poorly and I understand that. However I can’t shake this worry and the doctor won’t listen to me. My little boy is fare skinned, blonde. Bruises so easily and unexplained, I’m scared he had leukaemia . Especially since he’s got infection after infection. His legs get covered but weird small round bruises on the corner of his knee or thighs. Sometimes his legs look awful. He’s got 2 random bruises on his arm and I’m so panicked and just not being listened to. He wants to nap a lot longer I’ve just tried waking him from a 3 hour nap he was having none of it. Has gone off certain foods, not all but he was a foodie before. I’ve called the doctors 3 times about him and told them I was worried and to be told bruises are normal for toddlers. However I can’t shake this anxiety about Lukemia is. I’ve felt scared for six weeks I’m not sleeping. I can’t focus. He’s my first and only baby and I’m scared so much. Let me attach some photos. The bruises are odd. Sometimes I can’t work out if he had petechia, I’ll attach photos of what I think. But I just feel it’s not right. Two different docs have told me he is probably fine and one doctor told me I’d be traumatising him by making him have a blood test. I don’t want my son to have a blood test of course but I need him too. I’m trying to give him iron rich foods, to see if it makes a difference but I just feel worried. If I keep ringing the doctors they’ll think I’m an over anxious parent and I’m worried about that too. I don’t want them to report me for worrying which I know has happened to others.