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. 🙏🥰

I think I'd want him seen tonight tbh

I'd go to A&E now. Bring lots of drinks and snacks with you and be prepared for the wait but it's best to be seen ASAP.

Even if they aren't much help at least you know you've done everything.

Wish you all the best in getting this sorted. From what you describe, new symptoms developed recently so try to ignore feelings of time wasting as you’re dealing with changed circumstances.

you said earlier upthread he usually drinks huge amounts. Does he drink mostly water? If this is all juice, maybe something to change.

Just thinking about what little things are in your control currently.. My friend’s child was massive juice drinker and had (different) symptoms but skin and energy related and was advised to up water content and check ingredients list on the juice packets .

Hi Op. I've been following your thread. I'm sorry your little boy is so poorly. We were banging our head against a brick wall with our toddler. In the end we paid privately to see a paediatrician. He ordered bloods which we also paid for. It got to the bottom of the issue for us and then he did a letter to kick us back to the nhs. Cost more than 1k but that's a credit card well spent imo. This was more than 4 years ago now. He's 6.5 and now a healthy boy with his condition well managed

I'd get a referral to Nottingham Paediatrics. Lincoln are not great.

OP this all sounds incredibly stressful and I think I would be worried out of my mind too, even though my rational brain would be telling me it's probably nothing.

Just a thought, but is there any way you could pull the money together to see a private paediatrician, even just for a single consultation to give you some really sound advice about what tests you should/shouldn't be looking for, and to give you the space to feel properly heard and your concerns taken seriously?

I have worked in the NHS for some time and if I'm honest my greatest fear at the moment, with the way things are, is my child getting sick. I have no faith that the NHS will be picking up things they should be, as quickly as they should be. Not saying this to alarm you at all, but just thought I'd flag private as a potential option if you could stretch to it, because living with the worry you have at the moment must be hellish

Have you seen a copy of the blood test results? It may be worth checking if you haven’t, lots of GPs will say the results are clear for so and so levels but when you check the level it could be very near the bottom parameter (meaning they’re not low enough to be considered deficient but it probably is having an effect on day to day life)

If it’s not been mentioned, a coeliac screen would be useful. Itching, sweats, bumps, diarrhoea, low iron are all related to this.

We had similar and the GP said he would get advice from paediatrics. They asked for my child to be seen that day by them in A&E

i can understand the stress and anxiety and I hope you can get some answers all.

The email from the GP does not exactly inspire confidence does it?
I[d go to a&e and say things have rapidly deteriorated. I think you have to make a fuss now. You are in the system now and have done a great job... you have donne all you can. Just go to a&e now. It is what it[s for.

Hopefully the worst that will happen is you[ll look like a pain! I would do that happily for proper reassurance.

Best of luck and hope your boy is feeling better today, but take him anyway

He needs testing for IBD - stool test just take from nappy

diabeties - assume this has been done

celiac

cover all areas to rule to above out - the lumps are likely from him fighting something in his body - my son has IBD and gets a lumpy neck when he was in a flare, low. Iron and tired etc ..

I'd be so angry if this was my doctor's response.
I hope you get some answers soon, OP.

Oh OP, I can't believe how useless you GP is! Your poor, darling boy! I would echo the sentiments of others and go to A&E and refuse to leave until he has had thorough investigations x

Sometimes swollen glands don't go down.

I have one in my neck - feels like a hard pea - that's been there for years. I have eczema so it rarely goes down (not sure if bc of my eczema or just stuck like that).

When I'm really sick they swell up on the sides of my neck near my ears too.

But the neck one never goes down for me. So it doesn't really matter if it's been there for weeks. It can still be a gland caused by an old infection.

Although the number of them does seem strange. Mines rarely more than 3.

Hi all,

I rang the hospital about his referral as suggested by EACH to update new symptoms etc, they told me the referral could take months and if he has any new symptoms I should just call 111 😅

I rang 111 and said how I'm not getting far with the doctors and they won't do much more as they've already referred him and told them about the new symptoms and their system suggested I speak to my GP within an hour I was like great back to the GP.

I rang the GP and told them how I felt and that I think something needs to be done sooner i.e stool samples, urine samples (as his dad is type 2 diabetic and he has never been checked for that) more blood tests, anything and the response I got was they have no appointments today and suggested I take him to A&E if I'm overly concerned, the one thing I don't want to do because I know it'll be a waste of time and tbh this morning he does seem like he has perked up a little, he has a lower temp, he has played for a little bit this morning, but I can assume that he has accumulated some energy from the fact he was only awake a total of 5 Hours since Wednesday at 7pm, he hasn't had a dirty nappy since Wednesday, I will keep an eye on that today, he is much more chatty today though, can assume the calpol is doing its job 👍 his eyes still look very weary and tired though but if he does have another viral infection obviously this is expected but just seems to be a weekly thing now as opposed to a monthly thing.

The lump that's always been on his neck does look more swollen than it has been but again this could be down to viral infection, the ones behind his ear and back of his head etc are the same and just have never disappeared since they came up around 4 or so weeks ago now.

He is extremely bunged up and you can hear in his breathing with that but again this could be hayfever alongside everything else.. it's hard to tell when all they've done for him is blood tests that he had back in January when it was just the one lump... They've done nothing else for him except dish antibiotics out like water for his ear infections he keeps getting and that's about it..

I am yet to hear on anything from the cancer pathway as obviously that referral was only done a few days ago and they did I should hear something within the next 2 weeks regarding that.

I'm just going to keep an eye on him today and see how he gets on as he has actually got off of the sofa today to get his toys etc so fingers crossed for a better day!

Thank you all for the comments, you've all kept me going tbh as I feel very much alone in reality and this has kept me going.

Xx

Why do you think A&E will be a waste of time?

To me, he looks very poorly.

OP....you are going to have to make yourself unpopular at the GP. Demand to see the practice manager and raise your concerns directly. Insist you have their personal email, and then write a full account of all your contacts and advice on each, what has happened and what you are concerned about. Insist they are documented on your child's system1 record, and tell them you will be following this up with a subject access request to ensure it's all there.

I can almost guarantee this will spur them into action.

They have just referred him as 'routine' according to this 🤣 ... I think you are all right and I'm just going to have to take him up to a&e and hope for the best 😔 he does seem much more himself this morning, so I have a fear I'll take him up there and they'll say his temp is fine, all is okay, keep and eye on him and wait for the referrals to come through 🤣 i have taken him to a&e before sometime last year when he was the same and that's exactly what happened, although he didn't have the rest of the lumps there at this point he had everything else I've described so far so I just know how it's going to go.. I guess this is what stops me.. xxx

It's his eyes!? Does anyone know why they're doing that? Like I said he is playing as normal this morning, but he just looks so drained.

Pictures of his face and him playing (he likes to sit and empty his toy box 🤣)

Bless him - take him up to ED and just say everything you have put here - lack of energy (like serious tiredness), bruises, lots of lymph nodes, lump on neck and that you are seriously concerned.

It's laughable that the GP told you he was on a 2ww pathway (i.e. the cancer / fast track) but yet referred him as routine! I would raise merry hell once your boy has been sorted.

He does look unwell, like a cold or virus, which would coincide with the lymph nodes / temperature / cough and grogginess, but I honestly would've thought they would've scanned his lump on his neck to make sure it was harmless.

Please, please take him to ED and see what they say x

Hi. I’m just responding back on this thread - please take him to A+E. This is what A+E is for. Go now, take snacks, phones and chargers.

Demand further tests - bloods and urine sample. Explain everything, the amount he’s been sleeping, his temperatures, his ongoing fatigue and lack of bowel movements.

I say this as a clinician who works in A+E, you will not be wasting their time. He needs to be seen and unfortunately in the NHS, it’s those that shout the loudest that get the most efficient care.

Hopefully, it will be just viral - great, and you still won’t have wasted anyone’s time.

xxx

Also - I’d ring the GP receptionist back and demand to be referred via the 2ww pathway today, as the GP said told you. It is completely negligent to refer his as routine, particularly as you have been told otherwise.

You must request a copy of his notes too (likely a small charge, but this will scare the GP into going above and beyond).