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. I can't say my heart is calm and I do think something isn't right.

This is exactly what I've decided I am going to do. If anything else comes up, then I will take him.

Yes, much shorter.

That's once they take you seriously though. With my daughter we experienced a few weeks of being fobbed off first, but once red flags really started, the GP phoned the hospital who asked us to come up immediately. Seen by the consultant immediately. Scanned within 6 hours of the initial call. Well they tried but sedation failed, so they admitted us and tried again in the morning. Scanned at 11. Diagnosed at 11.30. Blue lighted to regional centre by dinner time and tumour operated on the next morning. She's mostly ok now. Could have been a lot worse but terrifying at the time.

So I totally take your concerns seriously because feeling fobbed off feels part for the course sometimes. But it also feels as though you are quite anxious with the amount of private appointments etc. I'm not going to presume that things are ok or not because we've been that one in a million diagnosis. However, if it was truly suspected they'd likely move with lightening speed.

I hope everything is ok.

I am so sorry to ask again here. So I just had a proper feel of his groin nodes and they really panicked me. On the right they are close together but oval and smooth and movable. On the right though... I am not sure what I am feeling. They're are firmer. Sort of thinner, like a thin kidney bean shape and then I also feel like some sort of long tube coming off it. I don't understand what I am feeling and why GPs did nit alert us to this?

Do they usually withhold crucial information like this???

@Wobblyheart I have no experience in this area but I just came across your thread & wanted to send you a handhold & a massive hug. I’m sure more useful people will come along shortly, but I can feel the fear in your words & just wanted you to know someone across the internet was thinking of you & your little one right now xx

Thought I'd make a mistake but no. I feel something like a horseshoe shaped there. Ter4ified and angry no one has alerted us.

I don't think he would've withheld it, maybe he didn't feel it or just assumed it was normal because he's been poorly recently.

Honestly, at this point I would stop feeling his lymph nodes because it's just going to drive you crazy. If it is cancer, especially an aggressive one, it will soon become apparent as he will continue to have symptoms and they will get more obvious.

Do you have support? Your anxiety levels are through the roof and you’re feeding it by constantly feeling lymph nodes and googling.

Kids have palpable lymph nodes. It doesn’t sound like any are particularly large, and it doesn’t sound like the GP felt any of them had a sinister character. As you say, You have been appropriately referred to paediatrics on an urgent pathway. Stop examining him and stop Googling. Wait for
the Paeds appointment.

Step away from Google right now.
I have only read your posts but you are working yourself into hysterics.
This is really important so listen. Lymph nodes are palpable in children throughout all of childhood. Because their immune system is learning what to do and is fighting all the time. They are supposed to be there and often take 6 months plus to get a bit smaller. The pictures you have shared are normal. Lymphoma presents in the neck as large (3cm plus) rubbery lymph nodes. Not barely palpable cervical nodes Vichows node is linked to GI cancers in over 40s. Not young children.
Stop going down a rabbit hole.
By now you have probably managed to get bloods and a US neck done but that is all that is required.
If anything else is needed it will flag up on this.

Honestly OP, you need to talk to someone about your own mental health. This level of anxiety is not normal or healthy - and it is having a direct impact on your son with how much you are checking and rechecking him physically, and seeking more and more medical opinions.

He has seen a number of real life qualified medical professionals. They do not share your concerns. There is nothing anyone here can say that is better than that.

Please, please see someone for support with your own wellbeing.

step away from google.

stop feeling the lymphnodes!

paeds nurse here.

does your local hospital have a paediatric assessment unit? If so, the gp can refer you straight in on the day. With just a phone call.

I will say I’ve see four very similar cases over the last two weeks and none of them were cancer.

it is very common for children’s lymphnodes to swell when a child is poorly, happened with all three of my boys

Oh gosh OP, I’ve been where you are.
When little, my sons lymph nodes were all palpable, the doctor referred us on the urgent pathway where they were ultrasounded and they were all fine, just normal reactive lymph nodes that took a long time to go down. My friend’s toddler is the same, you can physically see all his lymph nodes when he cries, they came up when he had a virus and never went down.

My son has also always had night sweats. Always. Worse at the moment as it’s hot.

I truly truly understand your anxiety as I’m just the same, but I have made myself ill with worry in situations like this, googling and googling, and it’s always so far turned out to be nothing xxxx

Thank you. The GP said we ought to go through the referral route and not to be referred to CAU since he is currently feeling well.

Thank you for your message too, it is reassuring to hear.

I largely agree with what you are saying on the whole but lymphoma in children can present in different ways, it isn't always the neck.

My son had lymphoma last year and he only had it in his intestines so no visable lymph nodes except when it started getting bigger and he had some swelling around his tummy.

Also, perhaps a silly question, but you mention when your son was weighed at the doctors, he was fully dressed and was holding two cuddly toys. Was he wearing the same weight of clothing and two cuddly toys when you weigh him at home?

With my daughter, she struggles with weight gain and so I always make sure she gets weighed in roughly the same weight clothes. Always a t shirt and leggings. No shoes. Her clothes weigh about 250g.

If you'd wished your child at home naked/underwear and at the doctor's fully dressed with cuddlies, then a change of 600g would be normal. Also a bit of fluctuation based on what he'd eaten, when he'd pooed.

Just as a frame of reference, my child was the same age as yours when her tumour was found. She was 10.5kg. She's now 6 and only a kilo heavier than your toddler.

He's still above average weight for his age, though obviously if he genuinely is losing weight that's more concerning.

Definitely try to get to the bottom off it, but at the moment I'm more concerned with your level of anxiety than his health personally.

Yes I know. These last few months have been hard and tipped me over. It's a story too long to tell and I am sure no one is interested. I do actually have mental health support lined up (but not yet started the sessions)

I find waiting for the appt very difficult. Like agoniisingly so. if anyone has any tips, I am all ears.

And may it long be that way!!! (As in stay fine), nit the making ourselves ill with googling. It really is a really bad thing for you isn't it. It avlctually is the cause pf the spiral but how cam you not when you ate worried about most precious person in your life..

I wish we had bloods and scans done! But I don't even know how long we have yo wait for the appt yet.

Thank you yes I think you are right.

I was mostly.comparing to when I weighed him back on 20th June and he was 13.kg. no shoes no toys but clothed and in a nappy. And then after the Dr's he was naked. And also his appetite wasn't there over the weekend when he had fever and he barely had any breakfast so probably all that. He seemed to eat better yesterday and today and I think this is the difference on the scales.

I feel for you, I really do. I hope you hear from the hospital soon. All I would say is keep away from Google. It will alway bring up the worse case scenarios. I know that's easier said than done. I just know how worrying it must be for yoou. Wishing you all the best.

If it helps, one of mine had multiple enlarged lymph nodes all their childhood (still does in adulthood). They had easy bruising as well, which made it concerning. There wasn't ever anything serious wrong.

At 25 we found out the reason for the easy bruising. Nothing major.

Moveable is a good sign more likely to be benign! (Think that’s how you spell it)

Feeling particularly wobbly today.

I called the paediatrics booking team and the expedite letter (with the request to see my son urgently) that was sent on Tuesday hasn't even been read yet. I was sort of hoping that they read it and wasn't treating it as a super urgent but it hasn't been even looked at.

I have booked him into a private ultrasound scan in London next week. Although I don't know whether I will have the strength to take him. My husband doesn't want to go and I just worry that if they confirm my fears I will completely crumble in front of my son and will then need to get him home safely somehow too.

Any nhs source says that enlarged lymphnodes in multiple areas should make you worry. So here I am worried, but his case hasn't even been looked at.

This is something to put aside for later, OP, because right now, it’s all about your little one! But… your husband has shown you who he is and how he responds to his family during a time of enormous worry. You have legitimate concerns regarding your son. And you’ve had to deal with a miscarriage simultaneously. He’s checked out. Shame on him! You’re carrying it all.

Can your mum or a friend or sibling join you at the private ultrasound (you’re absolutely right to have booked this)?

My husband isn't a bad person at all, it's the health issues we differ in opinions a lot. He just doesn't believe that there is a reason to worry. Hence, he isn't supportive of my panic.

Unfortunately, my family are abroad, and so are most of my friends. I guess that's why I turn to MN as it feels really lonely at times.

But also I don't even know if my son would be able to have chemo, if he were to be diagnosed. He only has one good functioning kidney due to a congenital abnormality. I am in bits.

I really wish that it was easier for all the worried parents to access specialist input quicker and easier.

Hi, my toddler has had enlarged lymph nodes for the last year and a half and I have sent myself into very similar spirals before. I hope you can be seen quickly but please stop feeling his lymph nodes it’ll just irritate them! Toddlers are so small and especially if you were checking them when he was lying down you have no idea even if they were his supraclavicular lymph nodes!