Lumps on sons neck

[nisham30]

Hey 👋 (overthinking, paranoid, need to stop googling everything and self diagnosing mother here, that needs help probably physically and mentally but I'll opt for just advice at this point 🤣)

Sorry for the really long post.. congratulations if you get to the bottom and have any advice or been through anything similar that could help me.

My son is 2, I noticed back when he was 14 months old (march last year) that he had a lump on the side of his neck.. at this time I assumed infection and just swollen gland however it never went down after a few weeks, I took him to the doctors in April 2022 and was told that this can happen with infection 🙄 I did explain it's been there for weeks but just fell upon deaf ears 😔

Anyway I took him back to the doctors for a potential chest infection around November time, and the doctor looked at him and first thing he said was "ah yes you can tell he has some sort of infection as his gland is swollen" 😅 I was like no that's been there since march and just never gone down, he then referred him for blood tests.

We had bloods done in January (not sure what bloods they tested though) but they all came back clear apart from slightly low on iron and that was that.

Anyway rolling forward to a few weeks ago, I noticed more lumps around 7 or 8 ... 2 surrounding the one he has always had, 1 at the back of his neck, 1 behind each ear, and 1 at the lower part of his head under his hair at the back, I took him back to the doctors and the doctor said she needed a second opinion from another doctor and would get back to me, I received a text from the surgery saying "please keep an on head and neck lumps and bumps and book another appointment for 3/4 weeks time" I was like what?!? The doctor didn't even know what they were and yet they're going to make me wait another 3/4 weeks?

I asked for a second opinion in person as he was playing with his left ear anyway so needed to check for ear infection also (yes he is literally always poorly but now he just gets on with it, he is such a happy little boy 99% of the time)... I was given ear spray this time around as his ear was slightly red and because he had not long had antibiotics for an ear infection a few weeks prior so I didn't want him to have anymore, but also the doctor finally referred me to whoever they have referred me to regarding said lumps...

Other symptoms I have noticed is bruising all over his legs (but he is 2 so assumed it's from all the knee sliding he has learned and in general just being a toddler) but still quite a bit more bruising than I would expect...

Extremely dry skin - the doctor has given us cream for this as aveeno cream just wasn't working and his skin feels like actual sandpaper (I put this down to seasons changing as he does suffer with hayfever allergies or so I assume given he was the same last year)

He sleeps a lot!! Has done since he was about 6 months but again because he has always been so good it's not really rang alarm bells until all these other symptoms but the other day he must have slept like 19 hours bar a half hour here and there... But that being said when he is awake he is a very active on the go toddler and always happy.. but he is also always unwell... I have 2 other children and they have never been this unwell so it's not like I'm a first time worried parent over something small 😅 that I could understand but I'm being made to feel like it's absolutely nothing to worry about and like I'm wasting time 😅 one lump I could kind of understand but several? Has anyone else gone through this?

Another symptom is his bowels... Most of the time for as long as I can remember he has had awful diarrhea but then other days it's like he is constipated but this is very rare the majority of the time it is just diarrhea (must mention there is NO blood etc in stools though)

He did have a nose bleed last week which he has never had before.. woke me up in the morning standing next to my bed covered in blood thankfully just a nose bleed as it terrified the life out of me thinking he'd hurt himself, was like something out of a horror movie 😅.. but again I put it down to hayfever season.

I just hope someone can shed some light onto what might be going on for peace of mind until I hear from whoever they've referred me to anytime between now and June and that's just for the initial phone call not an appointment..

It could well be absolutely nothing.. but it also could be something because no one can seem to tell me what's what lol!

I'm aware that this isn't a medical professionals group, just hoping maybe someone has seen something similar or going through the same and knows what it all is, I mean this is a bloody big group someone must have an idea.. just put my mind at ease whilst I'm awaiting a referral appointment to come through...

Thank you if you've managed to get this far. 🙏🥰

@StandUpForYourRights it's so hard to get a sample as he is still in nappies I'm not sure how to do it 🫣 any suggestions please? Shall I just take his nappy off and hope I catch him on the off chance? Xx

@Blossomandblooms thank you, I shall post what is said but I'm not holding much luck with doctors ATM and just makes me feel so useless and like I'm wasting time 😭

I've never had to get a sample from a nappy. Can you lay him on something where is doesn't soak in? Nappy free and hope for the best?

Hopefully someone with a good idea will be along shortly but I do think they will want to dip. Sleepy, excessive thirst.....important symptoms

Really hope it goes smoothly. Will be thinking of you

Just to offer a little bit of reassurance, as your mind must be going at a million miles an hour, my 3yo DD had almost identical symptoms, enlarged lymph nodes, a swelling on her neck, bruises all over her shins, low energy levels.

She has had so many tests over the last 6 months- blood tests, ultrasounds, x-rays and everything has come back ok and she's so much better now (3years 4months). Conclusion from doctors is that she has a prolonged viral response to a mild infection. Just wanted to offer some reassurance that it doesn't have to be one of the terrifying things you will google!

How did you get on?

With the thirst you just mentioned, have salivary gland disorders been considered? It could cause dry mouth and hence his need to drink a lot. (I'm not a medical professional but have some personal experience)

Hello all, hope you're all doing okay?

Sorry for the late response, so I took him to the doctors the other day, he is now terrified of doctors rooms so he breaks down everytime we get into the doctors room and hides behind a chair, i can only assume seeing as he very rarely has meltdowns that this could be the poking and proding from last time maybe he did feel some pain? Who knows.. but he doesn't like it, anyway due to him not wanting to be near the doctor they didn't do an examination of any kind of even look at the new lumps, however after much pleading they've referred him to the cancer pathway as a precaution which in my eyes they should have done in the first place just to rule it out.

The doctor said to me if he had luekemia it would have shown in initial blood tests in January, he then said you must be worried about lymphoma, and I said well yes I am as all the symptoms are there and although the chances are hopefully slim, it's not unknown for a child to have it and therefore should be ruled out.. as I know full well this does not show in blood tests hence why he referred him in the end, said I should hear something within 2 weeks.

Anyway we had a long day/night yesterday and last night, his eyes looked sunken and so tired he went to sleep at around 7pm with no dinner, I woke him at 9 to change his nappy and he was really hot and sweaty his temp was 38.7 so I have him calpol and he went right back to sleep until 7.50am this morning when he woke for juice , did his usual of sitting on the sofa, I made him some breakfast at 8.50 and he had some of that (usually he would ask for more but didn't today) he went back on the sofa to lie down at 9.10am and that's where he has been since, I've just got him dressed as I need to go to the doctors for bloods myself today but he hasn't played at all today and just seems to be getting more tired as the days go on.. that or he has yet another infection or virus.. we can't seem to catch a break.

Xx

Glad you've been referred and hopefully you'll get some answers soon.

Did the GP not dip his urine or show any concern over his sleepiness or excessive thirst?

My child had very similar symptoms and it was mononucleosis aka glandular fever

Might be worth asking about tests for coeliac too with the low iron and bowel symptoms? Good luck

@StandUpForYourRights hey, nope no urine test, didn't offer to do bloods again, no sign of giving too hoots about his tiredness or lack of energy at all, in fact he pretty much sat there just smiling at me the whole time I was talking 😅 xx

@LapinR0se unfortunately this has been an ongoing thing since he was a baby, however since march last year is when I noticed the lump on his neck and since a few weeks ago is when he has had more of them were talking several so unfortunately it's not just an illness that's ever gone away this has been going on for as long as I can remember xx

Bless his heart. It could be an awful bug he's got that is just lingering on but I;m glad they are listening to your concerns and getting him on a two week wait pathway. Can I ask which team they are referring him to? Like ENT / Head and neck / general paediatrics? I can't imagine how worrying this must be for you. Please keep us updated as we are all here for you x

Just got home, and he is back on sofa sleeping again, that'll be 13 hours sleep he had last night, been on sofa all morning apart from 10 mins for breakfast, out the house in his pram from around an hour and now he is back on the sofa sleeping 😔 absolutely ridiculous for a toddler to just sleep this much and be ill all the time... I hate the waiting game xx

What a worrying time for you. With the amount of time in 24 hrs he is sleeping it must be difficult for you to get enough food and fluid into the little darling. No wonder his eyes are sunken, he’s maybe dehydrated . I feel angry on your behalf, your GP has been useless. Another 2 weeks of this is completely unreasonable. If I were you I’d go to the A&E of the nearest hospital that has a paediatric dept and I’d refuse to leave until they did a proper assessment. They’ll not send you away and will take it seriously unlike your useless GP.

I'm very surprised with your GP. Sad to read.

And glandular fever is a very longstanding infection so worth considering

I really hope you get to see a decent paediatrician who will help and get to the bottom of this

I have to agree....I never advocate A&E usually unless its absolutely necessary but what else can you do?

This is awful, he is clearly so unwell.

Your GP sounds dreadful.
You sound amazing and I wish you and your handsome boy some reassurance soon x

Same here. I think A&E is overused and abused on a daily basis. But in this instance I think it’s completely unreasonable for this little fella to be expected to lie around with these symptoms for another 2 weeks. Any GP worth their salt would have lifted the phone to the hospital and arranged for them to attend today for assessment.

Please take him to A&E now OP. Poor little lad.

This is an email I got yesterday, would it be worth me ringing the hospital tomorrow rather than going up there, honestly the feeling of me wasting time after so many doctors won't listen to be is very strong, but yet I'm losing sleep over my son's behaviour and symptoms and constantly panicking all of this is something more but I'm just being laughed at, shall I ring them in the morning and update them? I don't even know what they put on the referral and whether or not they have even bothered to acknowledge the other symptoms I have told them about because they all didn't seem bothered in the first place apart from one doctor who went for a second opinion and clearly got shut down for me to receive a message of "bring him back in 2-3 weeks time" I have a feeling they've probably just put something about the lumps but his bloods being fine 😂 I know I'm an overthinking I get told by everyone atleast once a week which doesn't help. So after the picture I posted of [name redacted] sleeping earlier, he woke about 1.5 hours later, I took him upstairs as he was still tired and we both slept for 2 Hours... He came back downstairs with me around 5ish and tried to play with his toys but ended up back on the sofa, he managed to stay awake until about 10 mins ago and did manage another bowl of cereal as that is what he asked for (he went to the cupboard and pointed) that's all he has managed today is 2 bowls of cereal, he seems to have gained another cough and sounds very bunged up when breathing, his temp is 38.2 when I checked not long ago... He was due calpol just before he went back to sleep so I now have to wake him for that but he has literally done nothing but sleep today... Maybe this is just another viral bug and due to the other goings on I'm worrying more but it all seems to be too much, he is just always ill and it's just not fair that I'm not being listened to and just branded a worrier!

Thank you all for your lovely messages and support/help you've all been amazing and it's been a great space to vent and actually feel listened too! It's much appreciated xx

Yes ring the hospital and don't take no for an answer. In my experience those who shout the loudest get seen the quickest.
It's unacceptable they are making a child who is ill wait and wait.
If you don't get any joy from phoning the hospital take him to A&E.

@VeronicaTimeTurner thank you, I shall do that first thing, although I've had to email them to make sure it is our hospital they have referred him too (Lincoln hospital) and get a number as I'm sure if I ring the hospital itself they're going to ask me for extension numbers etc and Well I haven't been told who he was referred to the first time around!

This is now his temperature but it does tend to go up when he is asleep as it does most nights but he does sound extremely bunged up today/tonight though also xx

nisham30 I’m concerned that if he’s slept for such long periods today and is asleep again now that you’ve not been able to get much in the way of drinks into him. He’s likely to be dehydrated which is going to make him even sleepier. Now to add to his problems he has a high temperature. If you are not asked to bring him to the hospital tomorrow when you phone them first thing then I’d take him anyway and insist you want him fully examined. If he gets worse in any way overnight I wouldn’t wait till morning and just head to A&E . It might help if you write down a list of all his problems to take with you as it’s easy to forget something if you feel under pressure.

I'd go to a and e.