Child with enlarged lymph nodes

Hello all, 

My first time posting so I'm sorry if I'm not doing it right!

I'll just get stuck right in and explain...

My son who is 3 years and 5 months has had an enlarged lymph node on the right side of his neck for around 4-6 months. It is not painful or hot or red, just like a marble under the skin. He's never had anything like it when unwell but at first I did think, 'Ah its winter, he might have a bug' and waited for it to go down... it only got bigger and I thought, 'I must get it checked out' but then lock down happened and 3 months went past in a blur. About 4 weeks ago I realised he had a second lump come up under the first. I called the GP who wanted him to have a face-to-face appointment where on inspection she found more enlarged/hard lymph nodes in his right armpit. Going through questions with GP - my son does have night sweats and he's always complaining of tummy and back ache (I'm pretty sure that's just a kid thing though!). He had no sign of ear or throat infection and temp was perfect. So she ordered some bloods to be done. We received these results last Wednesday at which she said his white blood count was a little low (4.5) and his lymphocyte count was 2.1 (apparently this is low?). She remarked that this showed lymphopenia? Also, no signs of infection or inflammation.

She did an immediate referal to paediatrics who wanted to see him the same day at the children's assessment unit. He had bloods taken for a blood film and chest x ray. The x ray was fine, bloods again showed absolutely no sign of infection or inflammation. They also found a 3rd one slightly enlarged in his neck but said the ones in his armpit are smaller than those in his neck. 
We went back today to the assessment unit who said his blood film came back as 'reactive'. She said this could be because of a virus etc but he's not been unwell as we have been isolating due to lock down so I'm not entirely convinced but I'm no doctor of course!
She told me to google this... but I don't have enough information from them to get an understanding as it either comes up with references to cancer or an infection which he doesn't have. He has to have repeat bloods in 4 weeks as the doctor wants to keep an eye on how they are.

I have been going out of my mind as to what the cause of this can be. Lymphoma was my initial thought because he's not been unwell, not even a touch of hay fever this year.  

I was laughed at by one of the paeds doctors for the lymph nodes not being 'big enough' to be worried about but they are growing slowing and more are becoming prominent. Im sure in another 4 weeks they'd have grown even more!

I don't really know what I'm asking but some insight may help me. Or anyone who has been through something similar, what should I be asking or looking for?

Thank you to anyone who takes the time to reply to me!

Love from,

A very worried Mum x  

  • Would you mind telling me what the outcome was? Going through this with my 4 year old 

  • Hi  - so sorry to reply on such an old post. I’m going through a very similar situation with my 3.5tr old boy sadly. Sounds like you’ve had quite the journey and just wondered where you got to with it all - and how your son was now? SO hope in the mend! Thanks so much!

  • Hi, it has certainly been a journey. My son is now 8.5yrs old and still has all his lumps and bumps showing. He had a lumpectomy about 4 years ago to remove one from his neck which they biopsied. The results came back as reactive but we have absolutely no idea what he is reacting to - they said it could be an allergen in the air like dust or something he’s eating but ultimately, it was okay and nothing to worry about. He was discharged from oncology and paediatrics to just do ‘watchful waiting’ to see if there were any drastic changes in time.

    The lymph node that was removed actually grew back and grew bigger over time. They had a period of time 2 years ago when they all grew a bit more and the ones in his groin were hurting him so I took him to the GP to get checked and they did bloods. His white blood count and lymphocytes were on the lower side and he estimated the size had increased but nothing to be concerned over and the GP chalked it up to that this is just him, this is his normal. Whilst it was a very alarming time for me, he’s just a lumpy kid and his bloods are normal for him. I was told that getting checked is always the right thing to do but if they grow to a golf ball size, that is when I need to worry and rush him back. He still has his night sweats and he has a baby brother who is exactly the same so I’ve chalked that up to being something normal for them also. My grandfather also had lymphodema so we also wondered if it could be something hereditary going on.

    I know just how you feel. It really was the worst time in my life and it was constant appointments, blood tests, scans, prodding and poking as well as all kinds of antibiotics. When we were referred to oncology I couldn’t sleep but them offering the op to remove one for biopsy gave me relief. I could finally breathe again.

    We had a lot of conflicting results and reactions from doctors. Some were concerned, some weren’t, some were downright rude whilst others made me feel valid to worry. My advice is go with your gut instinct and document everything to show the doctors what you’re concerned over. I took photos of night sweats etc.

    I hope your little one is okay and it’s nothing to worry about but you’re doing the right thing by getting things checked and seeking help. Best of luck to you x

  • Gosh. What a journey. You poor things - must have been seriously traumatic! Did he ever ever fatigue at all/ anything else. Or was it primarily the nodes and the night sweats? I’m so pleased it wasn’t anything sinister - but seriously hard not knowing I bet. Thank you a billion times for replying - so kind of you to take the time and hugely appreciated. Will keep pushing this end and really hope your son gets to stay out of hospital for a while! Thank you so much again!