Leukemia/lymphoma/glandular fever

[tootymaloo]

I'll try to make a very long story short.

DS has been very poorly since Nov with a bad cough and tiredness and very raised lymph all around his neck. We were fobbed off until this April when we asked for a referral to a private specialist as local hosp refused to see him twice when we asked for G.P referral. G.P sent us for Xray, i think to shut us up more than anything and we got a call back same day saying both his lungs had partial collapse and he was very poorly.

Since then we have had more xrays and blood tests which have shown he has EBV causing glandular fever with lots of raised or low blood levels linked to infection. He is booked in for a sweat test to rule out CF next week.

We saw a specialist at a different NHS hosp that we were referred to on Friday and she wanted bloods done again to rule out indicators for leukemia and lymphoma. We were obviously a bit shocked as we thought everything was linked to the EBV and the bloods would have ruled anything out like that already.

What i'm trying to ask is wouldnt Leukemia or lymphoma be easily spotted by G.Ps or with routine bloods. The specialist said she had ordered more specific tests and we havent heard back yet which we are guessing is a good sign. Can blood tests be 100% accurate to rule them out?

His lymph around his neck were very visable on his xrays and they are also raised in his groin. I just want Ds better again.

I'm looking for reassurance really. Could glandular fever make a 4 year old this tired and poorly. I googled and it says young children get it very mildly. His adenoids and tonsils will be coming out soon.

Thanks

What a worry for you, OP.

I have no specific advice, but my ds had to have blood tests last week and I whipped myself up into a panic about the results.

My paediatrician friend told me that if bloods look dodgy - you are contacted very quickly indeed.

So - no news is good news.

I sincerely hope he is on the mend soon.

Thanks Porky, I think you are right that they would have contacted us by now. I have wasted another morning chasing the Drs surgery for the results but only locums on duty so no one will open the automated results service until tomorrow.

You would think they would know that parents go out of their mind with worry until they get the results through

Poor little soul:(

I had GF as a 10 year old and it is horrible - worse thing ever had and I was diagnose pretty quickly - if he has had it all this time then I'm not surprised he feels rotten - there is a week I can't remember at all :(

at google saying young children only get it mildly - every child is different. If you google 'cataracts' it will tell you they are something found in old age or that babies are born with. Try telling that to my DD who has developed them in adolescence (operation next week).

In not saying it's definitely 'just' GF - but those are all symtoms I recognise from having them myself.

I hope you get results soon and he starts to feel better, whatever it is.

Thankyou Morecats.

Can i ask if your lymph remained raised for a very long time. Ds has had whoppers since January with no sign of going down. His cough is driving us and him mad. Its no wonder his lungs collapsed, its relentless.

Sorry about your DD I hope the op goes well.

They don't spot leukaemia on routine bloods. DD had loads of blood taken at various points of me pushing for a diagnosis, and it was a 'fluke' (their words) that someone who looked at one of the samples was trained to recognise the leukaemia blasts in her blood.

P.S I was contacted within 24 hours and dragged back to hospital with her to have bone marrow to confirm diagnosis and start treatment immediately. No news is definitely good news .

gf is horrible and can last for ages

i too think no news is good news - i had the blood tests and was told a malignancy would show up.hope all goes well - take it ds is resting as this is very important in recovery.

My son's leukaemia was diagnosed from a full blood count. It showed very high white blood cells and low levels of Hb, neutrophils and platelets. It also showed that there were blasts present. I was called by the hospital within 90 minutes of the bloods being taken.

I hope it is nothing too serious, but I imagine the doctor is being ultra cautious.

My DD's leukaemia was also diagnosed from a full blood count and we were visited by a gp and sent to the nearest specialist children's hospital the same night. I really hope it will turn out to be the simplest option, feel free to pm me if you want if they want further tests or you're worried but I agree you would probably have heard something by now if they thought it might be cancer. Thinking of you, waiting for results like this is a truly awful feeling.

Thanks everyone for answering. Its been a stressful week.

We got the results back in the end. It was the LDH test that was run alongside the normal tests. Not sure if anyone has heard of that one?

Anyway it came back within normal range which we have been told is very good. I'm guessing that was the test they used to indicate anything really nasty?

His results showed the Epstein barr, high neutrophils 9.06. and low haemaglobin 10.5. Lots of other little things but all expected with the infections he has had. He had tonsilitis aswell on the day

I'm So very sorry to hear about your DC Farlo,Wendy and Kinky. I got myself in such a state last week just thinking about it all. I realise no ones allowed to be soppy on MN but i wish we had a hug smiley at times.

Would you accept the tests as conclusive? I'm only asking because the letter we have received gives us open access to return to the specialist immediately if needed.

Dh thinks i'm reading too much into a standard hospital letter summarising the appointment!

Ds has his test for Cystic fibrosis this Weds so hopefully that will be clear aswell.

Glandular Fever is certainly proving to be a bit of a nightmare. His letter states persistant cervical lymphadenopathy, lethargy, abnormal chest xrays and persistant moist cough ongoing since November 2011. I didnt realise it could make someone so very ill.

I cant believe its taken us 7 months to get answers but i really do feel relieved because it could have been so much worse.

Thankyou all again

Hello I know this post is okd but I just wanted to ask how things are my daughter is going through the same at the moment xxx

My daughter had leukaemia, diagnosed at 4. Her blood count was normal, so we were discharged, but later that evening recalled when her blood film was looked at and blast cells detected.

Hi are u the original poster with a different username.
I’m so so sorry about ur daughter abd I’m praying she’s ok.
My daughter has swollen lymph nodes night sweats for a year very pale and tired with frequent infections and no one is listening. Please can I have some advice my daughter is 2. I’m crying myself to sleep I know something is wrong