Help! Could my son be really sick?

[KD2016]

Hi everyone,

This is my first time posting here and I am desperate.
I will start with the fact that my son is 6, was generally healthy apart from having PIMS February 2022 He has recovered from this without any long lasting health problems and discharged from immunologists in June 2022.

For the last few months (since Nov) my son has really taken a turn and been looking pale and has massive black circles under his eyes. He is always exhausted to the point he needs to have a lay down on the sofa. He has been sobbing each morning for the last 3 weeks saying his left leg hurts ( after talking more to him he said it's his shin but said it comes and goes). Also has been complaining about his tummy hurting. He has a rash that's slightly raised ( at least since early Dec) and can feel his lymphnodes.

On boxing day he had a random fever for 4 days ( the fever would only appear in the mid afternoon - no other symptoms ) On Sunday night he woke up in the middle of the night drenched in sweat - definitely not weed the bed.
I have called the GP last week who dismissed us, i called again yesterday and was seen and sent to the hospital. They did an x ray which was fine. They also did blood which were also fine as i think there were some concerns. We have now been referred to the pediatrician as it's been going on for a while and he does look unwell.

I am seriously worried as i don't think it's normal for a 6 year old to feel like this??? I guess the point of this post is to see if anyone else had similar problem. Is it possible that it's still leukemia if bloods are ok?
Many thanks in advance!

You poor thing ☹️Nothing worse than not knowing what’s wrong. From my experience the bloods
would show leukaemia factors so the fact they were happy to let you go and are referring to paeds is reassuring (I know you still don’t know what’s wrong but it can’t be something really scary like leukaemia or he’d already be admitted following bloods. Don’t be afraid to ask what they are looking for next. It can be such a long process, you sound an amazing mama and you’re getting him the help he needs. Sending mam bear hugs 🐻

I cannot suggest strongly enough that you ask for an MRI. Xrays are no good really when looking for tumours. Lymphoma is a possibility that needs discounting. I'm not saying this to scare you, but my niece had similar symptoms except back pain rather than stomach. Blood tests and Xrays showed nothing. Turned away from hospital three times and told mum was paranoid.

Eventually she couldn't walk on her own but was still sent home. Eventually she was diagnosed with Non Hodgkins T Cell Lymphoma. The reason she had leg pain was a tumour that didn't show up on the xray but eventually it was realised that the tumour had cracked the bones as it was so huge.

Just keep going back. They need to rule everything out.

Oh, OP. I'm so sorry - your poor boy! I would take him straight back to the GP (possibly see another doc) and insist he is checked over again. Otherwise, could you phone your paediatric unit at your local hospital and speak with them directly? Tell them your concerns and what the GP has done thus far - see what they say. I really, really hope it's nothing but he needs more investigations.

Trust your gut. Your ds should not be feeling like this and only thorough investigations can get to the bottom of his symptoms.
It could be relatively simple such as thalassaemia trait and not storing iron - doesn’t show on a full blood count is my understanding. You don’t have to be obviously Mediterranean to have this trait.
However, as pp’s have said, we can’t know if it’s something worse.
I would push for earliest paed appt, even a cancellation and an mri.
If he worsens or has a flare up then I’d go to A&E where he can be seen by a paediatrician.
Sending hugs to you and ds and hope he’s soon well again.

Keep pushing, have they said how long your wait will be ?

Not saying it is a blood cancer (and it very likely isn't, so not to worry you ) but I work in this field and a lot of blood cancers are now diagnosed in A&E in both adults and children, due to GPs missing symptoms, as with lots of other things.

So if you are worried and have a long wait you could go along to A&E to help put your mind at ease, I know they are busy , but they will absolutely not mind.

How are you doing, @KD2016? Been thinking of you and hope your boy is on the mend x