I'm sorry that the lumps on your son's neck seem to be growing Nicki but hopefully he won't have to wait too much longer to be seen by the paediatrician.

We have had a few posts on the forum from members in a similar position so hopefully some of them will be along soon to offer their support and advice but in the meantime I just wanted you to know we're thinking of you and will have our fingers crossed for good news.

All the best,

Steph, Cancer Chat Moderator

Hey,

firstly just wanted to say I'm sorry you're going through this, I know how worrying it is!

I'm currently going through the same thing with my son who is now 3 years 9 months. His first enlarged lymph node came up on the right side of his neck at the begining of this year (just before his 3rd birthday). I just assumed it was a bug too as it was still winter time (although he was well at the time) so I left it to see if it would go down. Lockdown happened, doctors closed etc and I couldn't get it checked. So when a second one popped up underneath the first, I went straight to the GP (luckily they were taking some face to face appointments). GP found more in the right armpit so done bloods. They came back abnormal - white blood count low - in particular the lymphocytes. We were sent straight to the hospital to see a paediatrician.

Long story short - a lot of back and forth for bloods, scans and checks. He now has at least 3 enlarged lymph nodes on the right side of his neck, 1 (that I know of) on the right clavicle, several in the right armpit, right side of the groin and most recently the left side of the groin. Every visit to the hospital more were found. His lymphocytes have been consistently low. 

They've tried him on strong antibiotics in case it is a 'super bug' - one that lasts 10 months?! obviously it's just a stab in the dark. But we still have no diagnosis! Waiting to see the paediatric consultant in the middle of November to talk about the next step which would be biopsy. It would mean a general anaesthetic but it would give me more answers!
 

As for your son not eating - my boy went through a phase like that quite recently and fainted due to low blood sugar. He also lost a bit of weight but 2kg's is a lot to lose for a 1 year old!! I'm surprised they weren't concerned by that as that would be way more than 10% of his body weight!! Bless him! 
It's hard because kids do go through stages of not eating and times when they want to eat everything in sight so it's hard to tell if it's because something is going on with the lymph nodes or if it's just being a typical kid! I just kept offering favourite foods, snacks and milkshake just to get something in him. He's back to his usual hit and miss eating habits. 

Bloods would be a good starting point to see if there's anything going on there. It isn't nice for babies or kids to have bloods taken and can be distressing for you and them but they are worth having done as it can potentially give you more information about what's happening inside your baby.

They use a butterfly needle which is less painful and easier to use on little ones - my boy was so intrigued he kept trying to get his face as close to the needle as possible! 

Have you noticed any other symptoms? 
 

I do hope you get more answers for your baby. It's a very worrying time when you don't know what's going on. I'd definitely push for more tests if it persists.
 

Xxx

Hello,

I was wondering if you got anymore answers about your little one. My son 2 year old has had swollen nodes behind his ear and neck for months, he's had two ultrasounds and blood tests where his lymphocytes where also low. But they have said they think it's normal and the swollen nodes might just be something he has. 
 

Thank you,

a worried mummy 

Hey, 

so in November we were referred to the oncologist by the paediatric consultant, saw the oncologist in January who has decided a biopsy needs to be done to get to the bottom of it although he doesn't think it is anything nefarious but agrees it is very strange how he's got them up in several regions in his body without them reducing in size at all as he couldn't have several viral infections all asymptomatic in different areas of the body with no symptoms at all! Virology study also came back fine, no infections or inflammation, very bizarre!

We're still waiting to see the surgeon as with covid there has been road block after road block but hoping for an op date soon. 
 

I hope your little boy is okay. I know it is very stressful and at times you feel out of control but just have to keep calm and keep an eye on these things and push if you feel that there is more that doctors could be doing x