Hi,

firstly thank you for responding!

My son's lymph nodes on his neck seem to have grown a bit more in the last 3 weeks and the 'oldest' one looks like it has changed shape slightly, more like almond shaped than marble. His night sweats are still persistent but he's sweating more profusely during the day/evening now too. Having to constantly bath him to try keep him fresh! He's more tired than usual too.
We're due back to the hospital next week but I still have very little insight on what could be causing it as he has no signs of infection or allergies. I'm trying not to stress or worry until we see the doctor again but it's still in the back of my mind every day. I was hoping to hear from someone who has gone through this with their child so I could know more but to no avail. I guess I will have to wait patiently to know more next week x

edit - I forgot to add he has lost a bit of weight too, he was 16.1kg 3/4 weeks ago and is now 15.5kg. He has been skipping meals also. To the point he didn't eat at all yesterday but woke this morning at 5am, said his tummy hurt and then started heaving. He was very pale almost grey so I think he had low blood sugar from not eating anything. He is still active but just won't eat even if it's food he's asked for x

I'm so sorry to hear this and I am hoping and praying your little man is doing great have you had any updates of yet 

so my son who is 10 years old 

has an enlarged lymph node on his neck size 2cm for a year now 

the doctor a year ago said don't worry we will keep an eye on it 

back and forth and a few weeks a go I went again as I don't think this should still be enlarged for no reason a year later 

he once again says do not worry 

I have request a second opinion 

I'm worrying every single day about him 

xx

Hi thanks for replying to me!

Im sorry to hear about your son also, I feel your pain when it comes to worrying about them! It can feel so daunting not knowing what is happening! 
 

So a lot has happened since I last posted in July but I haven't got an answer yet but I'll start from the top.

The first enlarged node on the right side of his neck appeared at the start of the year.

I thought it would go as winter bugs are always present, then lockdown hit etc and I still hadn't had him checked. I then noticed the 2nd enlarged node just below it at the end of June, at which point I thought it definitely wasn't due to a bug because we'd been isolating for 3 months and he didn't even have hay fever this year.
He was seen in July and the GP found some more enlarged nodes in the right armpit. White blood count was low in particular the lymphocytes.

He was seen at a children's assessment unit who did some tests, thought it to be 'reactive' and said come back in a month.

He then returned in August and they found another enlarged node in the right side of his groin. White blood count was still low so they did an ultrasound on the neck and said it appeared normal as in no degeneration. But they were going to contact a London children's hospital for advice (they didn't )

My son then had his pre school booster jabs 2 weeks (middle of August) and he had a reaction in his right arm so he was seen at a children's ED. They prescribed antibiotics as a precaution because his white blood count was still low.

A few weeks after this the reaction on his arm had a strange mark like it wasn't healing properly - to this day he still has this mark like a scar but it's the whole of his deltoid area. 
I then noticed at the end of August he had another node come up on the right clavicle and I called the paediatric consultant as I'd read they are the ones to be most wary of - they called him in. The doctor we saw then found another enlarged node on the left side of his groin this time. It's almost like it's 'spreading' anti clockwise through his body!
The doctor prescribed a strong antibiotic to be sure that he didn't have some kind of super bug - I mean to last 10 months that's some kind of bug that I've never heard of! He had bloods done 2 weeks after and although his wbc had raised to just around the lower parameter his lymphocytes are still consitantly low.

He had another ultrasound after that (end of September) on the neck again and they have grown but they still appear to be normal - no degeneration but the sonographer was confused with as to what could cause it and said she'd expect to be seeing him again.

We now have to wait another 3 weeks until he is seen by the paediatric consultant to determine the next step which should be biopsy. It would mean a general anaesthetic but it's the only way to know for certain what it happening within the nodes.

Something I have noticed in this time is that he doesn't heal like he used to. So we went on a camping trip around the middle of September and he ended up getting stung by stinging nettles on his right elbow. The redness disappeared after a day or two like normal but the rash/bumps remained for over 3 weeks!! I've honestly never seen anything like it. There's obviously something going on within his lymphatic system. 
The last doctor we saw said he cannot tell me that it is not lymphoma or leukaemia but if he were a betting man he'd say it's not cancerous but he cannot be absolutely certain so we have to ensure we are doing everything right and get to the bottom of what's causing it. 
The doctors have been in charge of his care for 4 months now, he's hand countless blood tests and scans/x rays and we don't have any potential diagnosis. Driving me insane!

So that's pretty much our story so far! 
 

So questions for you: 

Has he any other nodes up?

Has your son had a blood test? If so was there anything concerning?

Has he had any scans or x rays?

Has he any other symtoms like weight loss, night sweats, fatigue etc? 
 

I would definitely stick to your guns about the second opinion. If it's concerning you then it's important! It's also important to say that not every one will present with the same symptoms or progress in the same way so it should be double checked. It's your baby at the end of the day, you're not going to rest easy until you know. If the second opinion agrees that it's nothing to worry about then I would be more inclined to ask about watchful waiting so that he can return after a period of time has passed to check on the growth and if any other things arise.
 

I keep getting told 'oh they're enlarged and hardened but not alarmingly big. I've seen huge ones like an orange/golf ball sticking out the neck' and I keep telling them that everything that grows will start off small until it gets big! Some of these nodes will grow rapidly and some slowly. My sons are definitely slow growers but the problem is definitely persistent! 
 

im so sorry for the long response. I'm a talker if you hadn't guessed and talking about what's happening with my son helps get it off my mind. I'm sure it's the same for you with having these worrying thoughts on your mind. It hits me late at night and keeps me awake stressing! 
 

I do hope you get more answers soon xxx

Really sorry to hear about your little boy how's he doing now? My child had a ultrasound on his neck as he had a lump and raised nodes both side and high temperature.

They checked for an abscess but it was fine but they noticed that the nodes were abnormal. They are treating the infection first and he's to go back for another ultrasound and if they are still abnormal then he needs a biopsy and an mri. Has your little boys ultrasound always been normal?

I am going through the same thing with my lo ...I'm so worried have you any update on what happened next with the lymph node? 

I am going through the exact same with my 2 year old! I could of wrote this myself x could I message you please xx

Hi I am so sorry you are going through all this.

My little boy is 6 years old he has had swollen lymph nodes in his neck since end of December. He lost a kg of weight in a few weeks so had blood tests in February which were normal but with reduced iron. The lymph nodes are still raised and he has been having night sweats and has been complaining of a tummy ache, always saying he is tired. He had a repeat blood test again showing the same results but is being referred to the paediatrician just incase. The GP said that it could be competing to the end of an infection or it might be the start of something.

I'm going through the exact same have been refered to ediateic oncologist x

Hi, have either of you have any updates on your lo's.

I am quite stressed and in the same boat. My nearly 6 year old boy has had a very small and tiny swollen lymph node at the side of his neck for over 6 months now but not been ill. We saw a Gp this past week who laughed off saying its the smallest lymph nodes he's seen . While examining him he found another tiny one in his groin area. He doesn't have any night sweats, hasn't lost any weight, he's always been a fussy eater so he's petite, sometimes complains of tummy ache and has a little cough after waking up in the morning everyday, but nothing out of the ordinary.

GP said as the lymph node hasn't changed in size or multiplied so can't be Lymphoma and asked not to worry. But I really can't stop thinking about why is it even there in the first place, surely its not normal is it? I was hoping he'd send us for some blood works atleast but didn't. I am now considering consulting a private pediatric consultant who'd look into it. Please some one tell me I am not overreacting on this x