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. 🙏🥰

Pic of the lump that's been there since march last year.

I think you should email this post to the GP surgery and ask for a double appointment to talk through all these symptoms. It could be nothing. But June is far too long to wait.

At the very least I’d be calling NHS 111 on this one. I’m not very impressed with your GP.

Hope a qualified medical person comes along with some advice soon.

I would advise you to ring the GP again and be really clear about what it is you think is wrong (I'm assuming you are worried it's lymphoma or something). That way the GP can either reassure you (e.g. it can't be because...) Or the gp could think shit it might be I'd better get them seen in hospital asap.
I thought my DC might have a brain tumour. Vague symptoms but on the NHS list. I hedged around it and constantly googled, gp kept saying symptoms were other things I kind of knew it couldn't be. It was a brain tumour, but because I was too scared to be open about my fears, DC was diagnosed later than they could've been.
Be honest with the GP about your worries. All parents worry things might be cancer, especially lump things that don't get better. They won't think your paranoid, they might be able to reassure you, or your child might get the treatment they need quicker.
All the best

Yep I'd definitely be getting a second opinion on this and not waiting another 3 weeks.
The bruises don't look too bad, my two year old is the same but the tiredness is concerning. If a child is sleeping for 19 hours a day that would indicate there's something going on that needs checked out.

Ask your GP to exclude glandular fever (mono) if that hasn't been done already - the lumps and the tiredness can last months; both before and after any sore throat, high temps, tonsils etc

Hi. I’m a paediatric dentist, not a doctor but I treat mainly poorly children in hospital.

Are the bruises just on his shins or elsewhere? Upper arms, thighs? How long have they been there for? Are the lumps hard or soft? Do they feel like they move under the skin?

You mentioned he had blood tests done and a recent nose bleed. Did they check his clothing factors? Did they prescribe anything for the iron deficiency?

Also, does his tongue look normal - ie. Like yours? Or is it quite pale and flat?

Sorry for all the Qs!

He has raised lymph nodes, a lump in his neck and bruises on his little legs - I would seek a second opinion ASAP. Failing that, could you go to your ED and speak to someone? Poor thing - I hope you get answers soon

@nisham30 hope all ok

@Notsoyummymummy2 hello 👋 thank you for responding and asking so many questions that doctors haven't 😅

The bruises are just on his shins that's why I'm not overly concerned, although that being said I was referred to haematology a few years ago now (back in the pandemic) for my constant bruises which I was getting on arms and legs etc) and then I was referred to Sheffield for platelet count as my bloods at the doctors were slightly abnormal.. Sheffield came back saying they needed to redo them and then they came back as fine and I was referred back to haematologist who said he would need to speak to Nottingham hospital but they were just going to put on my record I have a blood disorder they're just not sure which one 😅 so of course that makes me wonder too. I am trying to keep an eye on his bruises to work out a length of time because obviously he is a toddler and does run absolutely everywhere and knee sliding across out laminate flooring etc so of course he is going to have a few.

So regarding the lumps they feel hard, esp the one on the back of his head and the one behind his ears are like pea sized lumps however the one behind his right ear does look slightly larger than the other week when I took him doctors, the skin does slightly move over the lumps but the one on the back of his head not so much, the lumps don't move just the skin over the top of them.

His tongue looks fine to me, I checked this last night.

When they did his bloods they came back as fine as said a slightly low level of iron which I can resolve myself by giving him more iron products, which I have been doing but god knows if that's working or not because they're not checking up on anything.

Thank you for responding again :)

@spangleswereace

Hey 👋 thanks for replying.

Yeah it was just that day he slept from before I went to work around 5pm and my partner said he woke for a bit of food around 7ish and then went right back to sleep.. woke up at around 9am and then went back to sleep about 11am and slept for another 3 hours or so... He hasn't really done that before but he has always been a good sleeper, I'll put him down at 8pm and he will sleep until 9/10am in the morning... And he still has regular naps during the day which for a 2 year old I do think it's a ridiculous amount of time to be sleeping for especially as he sleeps through the night.

Xx

I'm thinking about ringing 111 today just to get some extra advice whilst I'm waiting for the referral as obviously it is Saturday so doctors are shut which does make me feel a bit better for calling 111 and not wasting their time as such... The thing is because he is always happy and so playful I feel I am wasting time but my god if it were to be anything more sinister I'd never forgive myself or anyone in the surgery that I've spoken to up to now! Because they have all made me feel like I'm panicking over nothing but I've never known a 2 year old (and I have 5 kids.. 3 of my own and 2 stepchildren) to have lumps all over his neck/head and be ill every single month.. he does seem to just be prone to infections constantly but somehow it doesn't phase him anymore and he just gets on will it all as normal. X

I can see why you are concerned. I would be pushing hard for someone to have a really close look at this. I don't think given your concerns and the overall picture you describe you are being in any way unreasonable.

My son had exactly the same including the low iron on the blood test eventually it all settled down he has acid reflux and is hypermobile I think he has a mild form of ED but the Dr's say he doesn't meet the criteria for testing

He is 14 we still have no answers the one answer we did get is its not cancer

@Theunamedcat thank you for replying, that's the only answer I want is that it's not cancerous! But how they can just look and go no, nothing to worry about it beyond me as obviously my 2yo cannot speak for himself on what is going on such as whether he has tummy aches or headaches etc.

It's really frustrating just not having any answers, if he was older I would be less concerned because I'd know more from what he is telling me but unfortunately I don't even have that. The fact one of the lumps has been there for over a year is concerning in itself, but for the other ones to just pop up and stay there is even more concerning, even for them just to offer some more blood tests would have been something but instead I had to push for a referral and the referral they have sent him to is still yet to decide where they're sending him too lol xx

I think you should see someone privately if you can possibly afford to.

If not you have to ruthlessly advocate for your son. I know this won’t be popular but I would also go to A&E. At least you will be seen by a doctor, and given an urgent referral if they think it is appropriate. Just mention a new lump and that he slept 17 hours yesterday (regardless of whether it was yesterday or not).

It is a shame our medical system has come to this but your child comes first.

As pp said, I would also go to A&E. The lumps and sleeping for so long could be a sign something is off. You must be so worried.

Honestly take him to A&E, my friends little boy had AML and had similar symptoms. I’m not wanting to scare you or say it could be but I’d not mess around and I’d demand answers asap xxxxxxxx

I would absolutely be pushing for immediate assessment and investigation.

Fwiw during the pandemic by daughter (9) had one lump on her neck and had an urgent ultrasound on it to rule out a tumour

A&E won't do anything really just add to the notes that xyz is still occurring they used to give ds antibiotics assuming he had an infection "somewhere"

I'd push for expedited referral to paediatrics at the local hospital.

Just to put it into context, I had similar
concerns with my DC, lump in neck, nosebleed, skin issues, and a few other symptoms. The GP rang paediatrics that day and they were seen later that day for a full check over, bloods and then an ultrasound.

Don't let them fob you off, push hard!

I hope you’re doing ok. I do this that it is likely to be a chronic condition, rather than something sinister (and I can totally sympathise with you and how worried you must be).

Has he ever had a stool sample tested? The tiredness, along with constant bowel issues and low grade iron deficiency may indicate something, such as Crohns or Collitis.

Does he ever get mouth ulcers?

Could you afford a single private paediatrician appointment (that’s what we did with my son). He will be transferred onto the NHS waiting list, and listed appropriately as urgent. Failing that, I would badger you GP to expedite the referral. If all else fails - take him to A+E (in the morning, expect a long wait, write down your concerns and how things have deteriorated, stress the level of sleep and bowel issues).

Sending big hugs x

@Notsoyummymummy2

Hello, I'm so sorry, I work full time as well so getting around to checking everything is a nightmare.

So I have another doctors appointment for him at 3.30 today, last night I got in from work at midnight.. went up to bed around 2 and my son was stirring, he wanted juice (he has extreme thrust and goes through juice like no tomorrow, this is nothing unusual it's been happening a while) he was really sweaty and proper itching the lump behind his ear making his head all red so I had to turn him around to stop him doing it, he had about 12/13 hours sleep last night and a 3 hour nap yesterday, when he wakes in the morning he settles on the sofa for 2 Hours before having the energy to get up and play like a looney and then he is tired again by 1/2pm and has a 2/3 hour nap and still sleeps for 12/13 hours of a night time.. this has been the norm for months.

He has never had his stools tested and as far as I know he has never had mouth ulcers.. just hope I get some answers soon... When I was feeling around his head last night the one behind his ear felt larger and I could feel more tiny ones at the back of his head xx

Take a urine sample with you so they can dip it for sugars.

Hope all goes well

Bless him, please let us know how you get on. Poor lamb shouldn't be that tired, his energy levels seem so low despite all that rest x