Is this normal? Would you be worried about leukaemia?

[nopun]

My almost 2 year old has been off colour for months. He's had a string of colds, tummy bugs, chest infections etc since the summer - pretty much a high temperature for the past 8 weeks, with the occasional day or two break. To top it all, a few weeks ago he was down with a fever and bad cough, and then got an awful rash all over his body. After a week of this he tested positive for Covid. The Covid test was 10 days ago, and he's still got a temperature that comes and goes, ear ache, sinus infection, weird nappy rash etc, is clingy as hell, and is still testing positive on the LFT.

I have an older kid and know this is the age when they get everything. But he only goes to a childminder with one other child (not nursery yet like the older one did), and this consistent series of illnesses, with him never really recovering in between, seems really extreme.

I've been worrying about leukaemia but don't know whether I'm getting myself into a panic over nothing. Some things seem to fit - the never ending series of infections, the fact that he hasn't put on weight in ages and is about to fall off the chart (but this could simply be because he's always off food when he's unwell?), he's really skinny but has what looks to me like an exaggeratedly large toddler belly. I haven't noticed any unusual bruises, and he's quite pale but not worryingly so.

Should I be worried it's something serious, or just a bad run of the toddler bugs? My GP already thinks I'm an over reacting trouble maker - I'd need some ammunition. Any ideas or words of advice?

No I wouldn’t be worried about leukaemia per se but I would be going back to the GP (once he’s clear of Covid) and saying they’ve had a high temperature for two months and that you’d like a referral to a paediatrician or some more analysis. Your son could have been really unlucky (two year olds do get everything) but it doesn’t do any harm to keep going back.
It doesn’t matter what your GP thinks of you.. you’re a mother with an ill child and it’s the GP’s job to investigate and help

The symptoms of blood cancers are pretty non specific, but it does seem that your DC at least three of them

• frequent infections that are hard to shift
• enlarged abdomen
• weight loss

Stay calm, point out that these - taken together - could indicate a blood cancer, that those diagnosed with blood cancer often have to make repeated GP visits before getting a diagnosis (I think Blood Cancer UK has info on this, in conjunction with campaign to ensure GPS are better informed). Ask fir a full blood count to be done.

If declined, ask GP to tell you their reasons for not ordering the test, and why they do not think that blood cancer should be excluded at thus stage.

Do remember, although leukaemia is the commonest childhood cancer, it is still very rare. There are lots of other possible causes. But it's important to rule out the serious ones at the outset

Thank you for your calm and sensible advice. Every time I have contact with the GP they make me feel that I'm totally neurotic. I need to get them to take this seriously.

@nopun

Thank you for your calm and sensible advice. Every time I have contact with the GP they make me feel that I'm totally neurotic. I need to get them to take this seriously.

My 2.5 year old same. Non stop throat / ear infections since may every 2 weeks. We ended up in a&e a few times with fevers over 40. I mentioned Leukaemia to them as he has bruises, bleeding gums, swollen glands etc they ran the blood tests and checked the film and said it came back clear. He's under ent waiting grommets now. If you're worried ask for a blood test x

Thank you @BAST1 - very sorry to hear you've had so many infections to deal with as well. But that's reassuring that they tested and couldn't find a worrying reason.

My LO needs to shake off Covid, and then I have to steel myself and go to the GP to request a blood test. I feel so demoralised after seeing them, they are often so dismissive and unpleasant. But he needs to get checked out. I really hope it's nothing but who knows.

Could you change GP? I became convinced that my daughter had leukaemia age 8 (shingles and persistent nose bleeds) and the GP just requested blood tests to rule it out, no argument at all.

When you see the GP to ask for blood tests, ask them to test for Coeliac Disease at the same time. Your child has some symptoms of that too (enlarged tummy/bloating, not putting on weight). My son has frequent infections, bloating, enlarged tummy and it ended up being Coeliac.

Test for coeliac disease

Id be getting into gp and not leaving without bloodwork being done/arranged and referred for a second opinion. Better safe than sorry.
Hope you get sorted soon.

Many thanks, everyone. He's had two days at the Childminder's & without a temperature since coming out of Covid quarantine - and is now off again with a high fever and signs of an ear infection. I'm going to ask for a blood test tomorrow.

I would see if you can get a referral to a paediatrician. My GP kept telling me my DD didn't have a physical disability for about a year. Eventually got to see a paediatrician and he diagnosed it in literally 2 minutes.

So it didn't go great. Doctor prescribed antibiotics for the ear infection but said she didn't see the point of a blood test - "if he had a blood cancer he'd be really really poorly, not like he is now". She initially agreed to talk to local hospital paediatrics for "advice" (not sure what this means, but it's not a referral - I think it's asking them whether they think a referral is warranted). But then she said this was a separate issue from the ear infection so would have to be requested via a new, different appointment. She also said it was "normal" for kids his age to be ill with this frequency. I made a new appointment but am also fuming.

I don’t agree with the “he’d be really poorly” attitude. My dd was diagnosed with leukaemia 21 years ago, she had a few strange bruises, and a petechial rash which is what prompted me to take her to the doctors. Other than seeming a little more tired than usual, she wasn’t “unwell” as such. My doctor was fab and sent us straight for blood tests.
You know your child. Push for a second opinion if he doesn’t get better.

You can't take no for an answer. As a parent of a child with a life limiting illness, I can honestly say that with some of the doctors I have had to insist on certain tests for my daughter , and on the two occasions I've been refused , I've told them I want a second opinion , at which point the referrals were made. You are your child's advocate . It's imperative that you insist

Change GP. I have two friends with children with or who have had leukaemia . Neither were very sick for weeks before. Both came out of nowhere. Both were a bit under the weather and then had a couple of tell tale signs. I also have three friends whose children are coeliacs and are literally really poorly if they eat the wrong things. I don't get why a GP wouldn't just run you a few tests to rule things out.

Unfortunately we can't change GP - the practices in our 'catchment' area are really full and not taking new patients. Even going private isn't really an option, aside from the money & principle, because the nearest BUPA registered GP is absolutely miles away.

Is their a practice nurse? Is there another GP at same surgery?
We are in a city so all the ones near us have multiples of both.
If it's a single GP it sounds like budgets come before your concerns

This is awful, but I’d recommend you go over this really thoroughly with childs dad & get him to go to the next appointment.

@unknownstory the practice nurse is the one we usually get to see (we saw her today), and she is the worst of the bunch. I put in a formal complaint against her a while ago which made things better for a while but not anymore. There are a couple of doctors who are usually a bit better (but it's more difficult to get appointments with them), but ultimately they all back each other up.

Tomorrow I think we'll get to see one of the doctors.

When my nephew had leukaemia the signs were bruising v easily on his legs and being tired all the time. He was so tired he abandoned his birthday party and went to bed. This was a red flag for my sibling and he was diagnosed just days after, and just in the nick of time as he was seriously ill. The doctors had fobbed them off with the whole ‘oh he’s prob just growing’ thing to explain the tiredness.

So the blood test results have come back. They're not normal but I don't know what to make of them - can you help interpret these?

• HbA1c is high (42, normal range 20-41 mmol/mol), but that's possibly because they hadn't told us to do a fasting test & he had just eaten breakfast & was eating snacks on the way to the test.

• Liver & kidney results look within normal ranges.

But:

• Haemoglobin is 97 (normal range 111-141)

• Platelet count is 553 (normal range 200-550), possibly because he'd just come out of an ear infection??

• MCH is 24.8 (normal range 25-28)

• MCHC is 315 (normal range 320-360)

• White cell count is ok (7.7)
• All the other blood measures are ok (neutrophils, lymphocytes etc)

Doctor has ordered another round of blood tests, including a fasting one. (How on earth do you do a fasting blood test with a toddler who still breastfeeds through the night??)

I'm really worried but not sure what to think. Is this compatible with a case of mild anaemia, probably because he's a very picky eater & doesn't get enough iron (& doesn't really eat at all when he's ill), or is it cause for greater concern?

Also, some of you were suggesting celiac disease as something that had to be ruled out. Would these blood results be compatible with celiac?

I'd be really grateful for any insights or suggestions, to help me from going quietly mad with worry.

Well I'd say 2 things.
GP is concerned enough to get more blood tests to check / verify results.
That justifies your concerns.
GP is not concerned enough to send you to A&E or immediate hospital consultation.
Rest easy that you are on the right path now and see what they conclude.
I'm not a medic so wouldn't comment on possible reasons.

@nopun how did things go with your son in the end?

I know this is old but I'm having similar concerns. Did you ever get to the bottom of this?