Need a handhold - multiple palpabale lymph nodes and weight loss toddler

[Wobblyheart]

I am crumbling. My 2.5yo have had vague symptoms for a few months now but having been to a private paed was assured he looks well.

Anyway... he had hurt his leg a week ago on trampoline and A&E thought it was a fracture, put him on a cast. Then ortho team reviewed him and confirmed no fracture and cast came off on third day. Since then he had 2 days of unknown viral thing which left him spiking 39-40.4. Took to a&e. They only did very basic check and sent us home saying it's viral.

However we went to GP today as his previous vague symptoms have been persisting and increasing in frequency (mainly eye pains / Discomfort) and they noted several palpable lymphnodes, potentially reactive in various locations. They are now asking our referral to a pead (we have one that has been made a month agp) to be regraded as urgent and to ask for bloods( including liver tests)... they asked us if he lost weight and I said no as he was weighed in a&e and it was fine (albeit he was fully dressed and holding 2 toys!). But I just rechecked him at home and he went down from 13.7kg on 20 June to just 13.1kg today. And i we didn't tell that to the GP. However this was after a week of poor appetite due to his leg and then fever...

On top of that... I just saw on Google that palpable lymphnodes just above the collar bone almost always mean malignancy and I definitely feel them there. There are not big there but palpable and I understand they shouldn't be palpable in healthy children.

I don't know how to wait till the appointment at the hospital. I am a mess. I am supposed to be strong and parent my child but I am teary and definitely not as a fun mum as I normally am.

I am just hoping for a handhold and maybe for people to tell me that they had something similar and it wasn't malignancy.

I am also going through a miscarrying right now and my emotions are through the roof.
A very worried mum who can't deal with the wait.

Thank you for sharing that. It does seem really like things are often outside of our control. I will keep pushing as much as I can. I just rang the GP surgery and they will pass on the information about his weight loss to the GP who has seen him who is back at practice tomorrow.

I've also done a stupid thing and consulted an online doctor on justanswer and they really alarmed me. So now I am feeling even more terrified than ever.

Got an hour and a half to get the house tidy, do a quick grocery shop and do some laundry before my toddler is back from in laws. Had to send him there as I am in such a state and he deserves to be happy.

Losing hope now. I have had a good feel of his area just alongside and right above collarbone whilst he was sleeping and I could feel 2 distinct nodes there. Not small. Not large. But the fact I am able.to palpate them raises cancer concern significantly.

I hope we get seen very soon.

@Wobblyheart if you are very concerned, why not take him to A&E and tell them your concerns? They can check him over, do a blood test and reassure / do further tests.

Any more temps or anything like that?

I agree with pp in that if you are still incredibly concerned, get him to A&E.

Thank you both. No more fevers but just sweating a lot in the first hour of hos sleep. I am hoping to speak to his GP tomorrow. They said they would send to the hospital on the same day if concerned. God, my head is spinning.

I know also it's not a reason not to go but we have been to A&E twice last week and he hated it, kept saying he wanted to leave and go home. I think this is hardest part, he is so clever and aware now. And then the GP was yesterday and again he completely.shut down in front of her though normally he used to be good at doctors.

Amd then I think this is not something I ever felt but now knowing it's a real possibility I just don't want them to confirm it.

Sorry guys. My husband is just so unsupportive, he doesn't see any concern at all and I am just carrying it all by myself and just need to talk about it somewhere.

❤️

I hope everything will be ok OP 🙏…
Sorry to hear you are going through a miscarriage aswel & that your husband isn’t supportive x

Do you have anyone who could take you this evening, like your mum / a friend? I know how you feel, as the anxiety of waiting and not knowing is awful. With my son (they thought he had leukaemia due to swollen lymph nodes and petechial rashes), we went to A&E (advised by GP first few times and then went of our own accord - these concerns happened over course of a few years), the docs were able to check him, give him a blood test and then admit for further investigations if necessary.

I know this is hard and it is not doing any favours for your own mental health. I personally would pack a bag, take snacks, drinks, phone charger and a blanket and take your DC in if you were very worried. It’s better to take action for your own peace of mind, otherwise you will spiral and then your own health will suffer. X

Check the NHS Quicker app and see how long the wait at your nearest A&E is for you. Hopefully at this time of evening, it should be relatively quiet and you shouldn’t be waiting long

Couple of things to add to the good advice you're getting already:

1. If they were worried it was something urgent you'd be in hospital. We've been in that situation and got from a 111 call to our local a+e to a specialist hospital in hours.
2. Your husband may be struggling too but not sharing that well. Society teaches men to hide their feelings but it doesn't mean he's not on your team and feeling it too.

Wishing you all the best in this tough time.

I’m sorry your DH isn’t being supportive, do you have any friends or siblings you could talk to in real life?

Even if they were to confirm it, at least you would know and then you would be able to find out an action plan. I think the what ifs and wondering can almost be worst sometimes.

I’ve had a palpable lymph node there since I was a teenager. I think it’s called a “shotty” node and it’s one that stays hard after an infection.

I really can't take him right now as my husband would be against it. It might be his way of coping but he actually doesn't think anything is wrong. Even the weight loss he chalked up to him being ill for a week. He wouldn't hear about the importance of those nodes in the clavicle saying I am making stuff up.

I will think about what I will do tomorrow. It's really not like me not to go to A&E but also with our experience three just from last Friday I have a feeling they won't do much at all. They just want to make sure the child is not immideate danger. I didn't know about the lymph nodes but was worried about neurological side of things worh his eyes and the limp and ingot totally fobbed off. That Dr didn't even bother examine our son properly. I know I will likely get a different doctor but I just can't explain it I just can't do it right now.

Unfortunately far too many parents get fobbed off.

My son's surgery turned into emergency surgery because a surgeon decided that it was just gastroenteritis despite the fact that nurses raised their concerns about a bowel obstruction to him. He kept on saying ''He's not surgical'' and of course, he absolutely was.

Parents shouldn't have to push so hard to be seen, especially when it is something as serious as potential cancer.

Thing is I have also seen a private paed twice in the last 3 months but - completely forgotten to mention night sweats. No weight loos was present then. But at the last exam when I did say I was worried about sinister causes (but I was unaware about his lymph nodes), he checked his stomach, palpate his neck (behind ears) nods and didn't even check his groin or armpits. So I don't even know if he felt in the clavicle or not. It wasn't a thorough exam at all. He did feel his nodes behind ears bir said they felt lime reactive nodes. I am blaming myself for forgetting to mention nightsweats. I was convinced they were not anything alarming just because he has them for like over a year but they did vet considerably worse in the last month or so. The main thing I was concerned were eyes / brain tumour and I really didn't even think about a possibility of a lymphoma.

What would you say when arrive at A&E? I am under impression that they might turn us down with the cancer worries anyway as this isn't a correct pathway for it since he is stable and active and playful etc?

With my Dc, I said I was very concerned as he had X/Y/Z symptoms. They cannot turn you away. If you aren’t happy with the doctor, ask for another doctor to review him. Be your child’s voice. My DD (on a different note) was poorly for years (3-4 years) and I saw countless docs and paediatricians as she had awful physical symptoms. Turns out she was coeliac and was literally a shell of a child, but NO ONE LISTENED TO ME. I had to nag and pester before someone finally listened and just gave my daughter a simple blood test.

What I do is write a list of symptoms on the notes section on my mobile; what symptoms DC has, how long they’ve been going on, are they getting worse, my concern, any virus that could be contributing to these symptoms etc - show this to
the doctor and they have a much fuller picture of your child’s overall health

@Wobblyheart I hear how worried you are but I think you’re spiralling and going down a rabbit hole of Dr Google. Your GP has raised it as urgent, and has ruled out leukaemia. Sorry to say, but if it was something like lymphoma- a week or two delay in treatment would be neither here nor there… IF it is… which in all honesty it really doesn’t sound like it.
cancer related weight loss is sudden and severe and not related to intake. So a loss when eating normally versus a loss when off their food due to illness. Your son only lost a tiny bit (was it even the same scales?) following an illness. Has he regained it? Further loss?

The nodes - these will be raised following a viral illness and this is normal. Many many kids have palpable nodes- my dd has one visible one in her neck and has done since she was 6. Anither has one at the back of the head which you could feel when she was a baby and it comes up every time she has anything wrong. Many skinny kids have visible nodes all the time and you should be able to feel nodes when palpating as you’re looking for them. Lymphoma node swellings can be huge and would likely be larger than normal and visible without palpating.

The pain and leg thing- although he didn’t have a fracture he could still have been sore like a sprain or something… he had an injury though rather than random pain with no cause.

Honesty I think he is fine and yes it will be good to get checked over but he is not A and E worthy unless you think he is in immediate danger.

Reframe in your mind that he is in danger and the world is going to end- see it as he is going to be checked over and God forbid he is unwell, why not make the last few weeks of normality as fun and relaxed as possible as worrying and panicking isn’t going to change the outcome.

I am aware you mentioned a miscarriage too so please don’t think I’m being harsh towards you. I am sorry for your loss and I really hope you have some support. Let yourself be upset and grieve. Don’t throw all your energies and misplaced sadness onto this situation as a distraction. Maybe take your wee one to the beach and write your baby’s name in the sand or plant a flower with him…

All the very best to you. 🌷

Oh, OP. I absolutely feel how agonisingly worrying this is for you. The wait itself is just agonising. Do you know what hospital your little one has been referred to? You can ring the paeds department or outpatients there and find out if an appointment has been made (sometimes, it can take a few days to get the letter). Just have his NHS number to hand (you won't know his hospital number yet).
Once you're plugged into paeds, things will move swiftly. And also, once you have the actual appointment, you can ring every morning to see if there's a cancellation between now and the actual appointment date (which I gather, won't be a long wait at all, at any rate, since the referral is an urgent one).

A small not-so-much update. We went to see a very good gp (one that I trust) instead of going to A&E.

The GP appointment was very confusing. He could feel that node but questioned whether it is low cervical. However if I look at diagrams my sons node that I am feeling seems to be the worst one - vichrow's. It wasn't enlarged just palpable.

He could feel raised / enlarged ones in several areas though (though they are still not visible to naked eye just palpation). Two in groin both sides, several in neck. Mostly on the left but possibly one right too and those near clavicle.

Weighing him at the Dr's he was over 14kg and seemed to have had a growth spurt as he is now 94cm. Re-measuring him at home he is 13.7 but he also looks puffy today so questioning whether this is fluid build up or I can take this as a reassuring sign.

Gp thought he looked like a well child and he said if he referred us today to hospital they'd turn us down as he is not unwell right now.

He wouldn't pass judgement on the nodes but said it is possible that they are just reactive.

He wasn't aware the palpable supraclavicular nodes in toddlers (not enlarged) were associated with malignancy.

No answer about night sweats.

I don't know where this leaves us

I think, @Wobblyheart, you’ve had many repeated reassurances so I would try and think logically; if your DC had anything “majorly concerning” right now, you would be in a 2week cancer pathway to hospital (it’s different to the urgent pathway, which is usually a month or so long before you see a hospital medic), or would be en route as you type to the hospital.

You have a lot going on personally, so please be kind to yourself. If I was in your shoes (and I have been), take reassurance from today’s appointment. Tomorrow, call the hospital paediatrician secretary and ask to be added to the cancellation list. This would be a better use if your time and energy; write down your son’s symptoms and your concerns and questions. If you aren’t sure about something, ask the doctor to clarify.

Do not go to google - a REAL LIFE doctor has reviewed your child and, if they had an immediate concern, they have a duty to ensure that child was seen tonight / referred immediately. Try and take heart in that.

Thank you, I am feeling somewhat calmer but the GP didn't really offer reassurance verbally.

Oh I didn't realise that there is another urgent pathway, I thought they were all 2 week ones? And even shorter than that for children if cancer is suspected?

You are right about the Internet though. I like noone should know it. I had a very suspicious tumour on my gluteus muscle after my son was born. I was referred with the suspicious of the soft tissue sarcoma. I had a wait of 4 months - it's just each step took too long between tests and biopsy - until it was confirmed that it was a rare benign tumour - intramuscular myxoma. It was fast growing too which wasn't typical for it but yeah. Everything on the Internet told me one thing and it wasn't. I pray it will same good outcome for my son.

Just keep an eye on him, you know him best. If he spikes again or develops any new symptoms then take him straight back.

I'll be thinking of you.