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.

Oh my goodness sending you a hug 💐no advice but wishing you the best xxx

Oh hell.

First off, the lymph nodes can come up if he’s fighting infection and if he’s had the virus I’m recovering from that might account for it (ok yes maybe I am clutching at straws)

Sending a big hug. Hopefully the fact the private paed didn’t pick anything up means whatever it is has been picked up early

Hugs cxx

I'm so sorry to hear that, I had similar worries with my little one a while ago (turned out ok in the end) but the waiting was horrible.

I would advise going back to the GP (and even A&E) and insisting that they check the lymph nodes again and explain about the weightloss and everything else - tell them you what you are specifically worried about and that you would hold them accountable if they had a chance to catch this early and didn't. Take notes in front of them.

I know it's a hard line to take and all the health care providers are doing their best in an extremely stretched system. However, no one will have your child's best interests at heart more than you and so it's easy for things to slip if no one is actively pushing things along.

PS My good friend lost her baby because she kept being fobbed off (when she KNEW) there was a problem, and she will forever be left blaming herself for not 'kicking up a fuss'.

Good luck OP, I'm holding everything crossed for you that it will turn out ok.

Hugs by the boatload!

It’s fantastic that they’re moving quickly on this. The odds of it being anything sinister are so low, OP. My son, when he was two, had multiple lymph nodes come up. He had a virus (human parvovirus) and his glands came popping up all over the place. Kids’ glands tend to really swell up in the early years. Try to remember that the likely outcome here will be total reassurance of good health by the clinicians looking after your little one. The trampoline accident is just a common misfortune. It’s normal to connect the dots. But it’s probably completely unrelated. You’re just in the thick of parenting a toddler and lots of stuff happens back to back at this age. I hope the days fly by super quickly so that you can turn over a new leaf and be reassured that your little one is well. Strength and hugs, OP. The waiting is the hardest part.

Oh my goodness, I just clocked the ending of your post, OP. 🥺🥺🥺 Life has come to challenge you. I’m so sorry that you’re facing so much… too much, you poor soul. Everything must feel way too big right now.

Step away from Dr Google. Do I understand that you already have a referral to a paediatric Dr? Call GP surgery and explain how worried you are and why.

I agree trempolinenis probably just a coincidence.. but.... he fell on one of those big multi trampolines and it didn't look like a nastynfall, kept holding his sheen and crying. He has just regained his confidence walking on it but after a good day today he was limping again on it and holds it by the sheen and i think that can also be a symptom of lymphoma.

I am terrified. I am awful in a crisis. I am just crumbling.

I have just sent a note to GP to alert them to weight loss. I hope we are seen soon.

OP worst timing lovely. Hope there’s some time to take care of yourself too.

Responding as I’ve been down the two week wait - twice - with two of my children. First was (long) pneumonia type illness and needed two night stay and medication. The younger one was weight loss, lymph nodes, extreme fatigue and reports of pains (over a few weeks, increasing) - which ultimately was concluded to be anemia and post viral. We likely have something malabsorption-y as a family BUT I’m sharing as all you can do is follow the pathways. The peads specialists we’ve seen have been fab. Thorough, comprehensive. Keep a symptom diary. Include sleep food and output (even a rough guide is helpful for them). But try not to panic. There are other options than Google is suggesting.

I am a parent not a medic, but I think weight loss would be bigger than that. And also he has been ill this week so that could explain a bit.

My then 2 year old had swollen lymph above his collar bone . GP said he would be worried if he was a 65 year old smoker but not in a child.
I think you might be adding two and two and getting 5 ??
Try not to worry so much - sounds like it could just be the confluence of a number of unrelated issues .

Thank you so much for your kindest reply.

I have actually followed up with my GP to ask if the location of those nodes is concerning and they are actually palpable. Not sure if they'll humour me. And also told them about the weight loss as I was unaware about it at the appointment.

I am trying to take comfort that they said they are doing it because they are being cautious and if they saw real red flags they'd sent us to the hospital on the same day. However, they didn't know about the weight loss.

He also sweats at night and I thought it was common in toddlers too but now I am a bit more scared.

He is still happy and playful and his tummy was soft and no enlarged organs so I think that's good.

I am just having trouble not to catastrophise.

My DS had lymph nodes in his neck that were huge, and sweated so much at night that he left rings of salt on his pillow.
I was convinced something was wrong, but it was just a virus that had hung around. His lymph nodes took months to go down.

First of all in the vast, vast majority of cases, it isn't cancer and I really hope that is the case for your child. It can be so common when children are unwell for their lymph nodes to be huge.

I also agree with pp's to go back to the GP and mention the weight loss. Your child needs to seen ASAP.

I do want to share that my son was diagnosed with lymphoma last year and it is incredibly treatable. It's hard of course but on the small chance it is lymphoma, you and your little one will get through it, I promise.

Thank you so much for your reply and I am deeply sorry to hear about what you are going through with your son. From all my heart I wish him to be completely cured and live long and happy life.

Thank you for sharing your knowledge with me too, I will rely on it i am sure a lot when trying to calm myself down whilst we wait.

Thanks. 9 months in remission and counting, he's doing really well.

Massive hugs.

Hi OP, I just wanted to share that my 2 year year old had very enlarged lymph nodes above collar bone and we just had a normal blood test result last week 😊

Pre-blood test result, GP said it was almost certainly just an overhang from infections despite being enlarged for 6 months plus, and blood test was just a precaution.

Obviously explore all areas, but do challenge what you have read about "almost certain" lymphoma. Sending big hugs.

Thank you! It's so reassuring to hear. Do you remember how how above the collarbone they were? For my son I can feel them here. They are tiny but I think you shouldn't be able to feel them in a healthy child.

I've managed to sleep but I don't think I will be able to function.

The wait is agony.

I know at this point it's a useless rambling but I just can't get past the constellation of symptoms

Eye pain - persisnent over 2 months
Tummy and head pain - rare, mild
Limping leg - no obvious fracture
Night sweats
A little more tired than usual
Lower appetite
Unexplained fever
Weight loss
Multiple raised lymphnodes across the body
Supraclavicular lymphnodes that are tiny but I can palpate

I know I need to get healthy foods and cook for him his favourite (or meals he still tolerates) but I honestly just can't bear anything.

@Wobblyheart you poor thing! Please (and I know it is difficult), but try not to panic. My DC (2 of them) ALWAYS have enlarged lymph nodes above the collar (my son has a permanently enlarged one right on his collar bone and has had it for years). If they are ill, their lymph nodes swell - it is a TOTALLY normal response to an infection and shows that their immune system is working well! My son has huge (and Im talking grape sized!) lymph nodes in his groin that Hes had since birth.

These things you’ve noticed could be absolute red herrings and totally unrelated to each other. If they thought your child had cancer, he would be straight at the hospital, or at the very least, have an appointment with the paediatrician within 2 weeks.

My advice is to;
A) step away from Google (it will only ever show you worse case scenario).
B) call your GP today and mention you are concerned about the weight loss (but remember, if he hasn’t been eating much due to being unwell then he would’ve lost weight).
C) call the hospital and speak with the secretary for the paediatrician. Tell her you can come in at the drop of a hat so any cancellation appointment, please let you know.

I was in the same position (son was suspected multiple times of leukaemia due to enlarged lymph nodes and petechial rashes) but he was fine. I am praying it’s the same for you. 🌷

The hardest part is that the symptoms can (and are usually) be identical to the random viruses children can get too including the raised lymph nodes.

I didn't think for a second that my son had cancer, even when they explained he had a blockage in his bowel which was unusual for his age. I thought it was a tummy bug and then I just thought it was the more usual explanation of a bowel blockage of his age such as a complication with appendicitis which we all thought it might be including the surgeon.

I don't know if it helps or will make you worry more but just in case it helps and maybe gives you other things to watch out for, my sons symptoms. You'll see that he has some of the same but also some that aren't the same as well.

vomiting
tummy pain - started mild, became severe
swollen and extended tummy
night sweats - this didn't happen until my son was already diagnosed a week after his initial symptoms
small rash on leg - this is because lymphoma is blood cancer and he had low blood platelets which can make them bruise easier or cause a rash

He had it in his intestines. He had no raised lymph nodes anywhere else other than in his intestines which is what caused his tummy to be swollen and extended.

Do you know how long you'll be waiting? Keep pushing to be seen as soon as possible.

Hi OP, just going through your symptoms list -

Eye pain - persisnent over 2 months - hay fever?

Tummy and head pain - rare, mild - normal in children and not an obvious concern. Is his stomach swollen? Any bowel issues like constipation?

Limping leg - no obvious fracture - he could’ve hurt his knee? Or it could be irritable hip if he’s had a fever and been unwell?

Night sweats - are we talking “absolutely drenched, soaking pjs and having to change bedding” or “it’s been hot at night and hes a bit sweaty?”

A little more tired than usual - could be the weather related tiredness?

Lower appetite - again, if he’s unwell, likely not have much of an appetite

Unexplained fever - how often? How long for? Just a one off? If so, his body may have been fighting an infection, hence enlarged lymph nodes

Weight loss - again, if under the weather with a virus, this is explainable

Multiple raised lymphnodes across the body
Supraclavicular lymphnodes that are tiny but I can palpate - I can feel my children’s all the time, as my son is very lean and yoh can literally feel them from his neck, down his ribs and in his groin. It is totally normal for children to have enlarged lymph nodes when they are unwell, so please try not to worry about those.

You are doing the right thing getting him checked but please remember that your child could potentially have had a few back to back viruses that have knocked him sideways. This happens to my DC and it knocks them for 6. So long as he gets better between episodes, that is the main and reassuring thing x

Thank you for sharing this with me. I have heard that presentations can be different. My son doesn't have any obvious issues with his stomach, he's been examined by multiple people and they all said "nice and soft, no enlarged organs"

To be honest, I admire everyone who is in the "don't assume the worst camp", I wish I could be like that too but my brain is just misfiring. It must have been an awful shock when you did find out, though no worrying prior would make the outcome different or less painful.

I am so glad to hear that your son is now in remission.

My friends son was diagnosed with neuronlastoma at 5, which was initially missed and seeing them go through this, I can feel what a difficult path that is.

Can I ask what type of lymphoma your son had?

Thank you for your reply.

So our GP said "I do not think it's leukemia (nothing about lymphoma) but given the new findings they are making urgent referral" so I think we are under 2 week pathway. That was when they didn't know about weight loss but I have sent them a message with that.

As to symptoms- eyes don't seem watery or red.

Tummy - he has always had very soft, paste like bowels, sometimes quite loose. But this isn't a change, he has been like that always.

Night sweats - these also have been going on for at least a year but they have become more intense in the last month. His head especially - his hair just gets soaked with sweat despite me dressing him lightly. His body also sweats but doesn't drench his tshirt although on few occasions it is damp enough thst I changed him. Here ais the phot odlf sweat from his head which is about normal for him...

Unexplained fever - we had one instance in April (just one afternoon) and one instance over 2 days this weekend. But no cause was found at all.

So I think yes it is probably not conclusive enough and I need to have hope.

I will update here as we have any news.

Sending so many hugs your way lovely. I am a catastrophiser too and stuff like this is our worst nightmare. When DD1 was 4 she had swollen lymph nodes on her lower neck which thankfully were just from a previous virus maybe about a month or so prior and gp said it’s very common in under 5s. Look after yourself and your little one as a priority. Don’t worry about healthy food etc just get food in you both. I know this is so worrying for you and it feels like your world is ending but you will get through this xxx

Presentations can definitely be different because it would depend where it is. So like for my son, it wasn't anywhere else except his intestines and then caused a blockage in his bowel which meant he had all of those tummy issues.

I sometimes wish my mind had jumped to cancer because he ended up getting quite poorly due to the bowel blockage and needed emergency surgery. It's a hard balance, you don't always want to think it's the worst thing but if it is, early diagnosis is key and sometimes as you've unfortunately found out with your friends son, it can be missed unless you push. Even after the surgery, the surgeon now knew it wasn't appendicitis but still had other theories and said whilst it could be cancer, it was unlikely. It wasn't until we got the biopsy results back a week later that we found out it was actually cancer.

He had non hodgkins lymphoma, a type called burkitts lymphoma which is the most common type of non hodgkins lymphoma in children. It's a nasty bugger but incredibly responsive to chemotherapy. After my son finished treatment, I was told there's a 90% chance it will never come back.