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 everyone.

We were sent home and someone is going to call with blood results when those are in.

I am a bit disappointed we didn't get to wait there and discuss it with a consultant in person as I still have a lot of questions- especially about his eye pain and the fact that there are so many nodes everywhere in his body.

But for now we wait for the bloods.

Hi @Wobblyheartsounds like they assessed the nodes as not meeting the threshold for scanning. If they are soft and below a certain size they won't be worried. I imagine if something comes up on the bloods you'll have a follow up and can ask about scanning. Serious conditions don't always show up on ultrasound, so wouldn't necessarily provide you with the reassurance you need. And biopsies are unpleasant for little ones so they have to be sure they are necessary. It sounds like they aren't too worried about him but now he is in the system you can insist on not being discharged until you are sure they have answered all your queries and done all the necessary tests. As lots of people have said on here, multiple lymph nodes can appear in children, particularly if they are fighting lots of illness. They can take ages to go down. I've been in a similar position to you and I'm hoping you'll get some reassurance soon x

Hi OP , hopefully they are not to concerned given they sent you home. I hope you get the results ASAP.
If its anything urgent they should call you today/ tomorrow my baby had blast cells (which can be a sign of cancer )in his blood following chicken pox , we had his blood tested weekly after discharge until they went . But each time I was told if they were concerned or the cell count had gone up I would hear same day . They always called me the next day with the results and an update. X

Thank you. You are so right.

I am really trying to focus on the fact that the paed isn't worried. I don't want to go down the rabbit hole worrying they might be missing something even though I know it was a reality for some people.

Yes she said the nodes are too small for scanning but I am still worried about the nodes in his groin that are matted together. The Dr said it wasn't worrying so I am trying to let go.

I saw they are going to check his LDH among other things. I will update when we have the results.

Thats a huge relief, @Wobblyheart! Woth the lymph nodes, my son has many very obvious nodes (I was told by one doc that his rib and groin nodes were so obvious because he is very slender). As he has grown, they are not as obvious.

Try and take a deep breath and just wait for the bloods - if those are fine then I would just focus on vitamins / making sure your child is getting all the right nutrients, as he could’ve had a few back to back bugs which have depleted his immune system.

You have done so well, you have been a great advocate for your son. Sending you much love and hopefully you sleep well tonight x

Bloods are in.

Overall they are okay. But.

The LDH is slightly elevated (300 something) but I didn't quite catch what was the normal range (I asked to repeat and still didn't understand it!). They said it is elevated but not to a degree to worry about anything.

He also had elevated creatinine so query about his kidney function / dehydration. I guess I might need to follow up on that with them... ir with his kidney doctors since he has only one good kidney.

It was a nurse calling as the consultant finished their workday and they said that they will check with them if he needs to repeat the bloods at some point.

Really not quite sure how to feel about this all. LDH is really scaring me but I guess overall the results are fine.

That is reassuring! Give your boy a big hug and try and relax, you’ve got many needed answers to those big questions now. If it was something “major” the consultant may have called you themselves. You’ve done so well, OP 🌷

For a toddler, our normal range (varies slightly between labs) is up to about 320. When I’ve seen it in lymphoma it was a lot higher. And they’ll have done a full blood count and film to exclude leukaemia. So honestly sounding pretty good.

Thank you, that's what I have figured looking at nhs sources online but I am not entirely sure that what I heard they said was right, I really struggled to understand the caller. I know that they are not alarmed by the results so that's the main takeway I am trying to focus on.

I just wanted to come in and thank everyone for their support, it meant a lot during the wait for the appointment.

I do feel reassured somewhat after being seen yesterday though still feeling uneasy as we do not have explanation for his eye symptoms and nobody mentioned any viral bloodwork so again no explanation for the widespread lymph nodes. I am trying to focus on the fact that the paed thought they were small, that she wasnt alarmed even by the ones that were matted together, but it is hard not to continue to worry knowing that bloods alone do not rule lymphoma out.

I wish we could have spoken with the doctor again, so I can have a clearer answer to that. I have been told that nodes are almost reactive (though I did make sure they know that he hadnt had any bugs or viruses in the last 2 months) and that I felt his nodes in his groin a few months back too.

So it is a strange place to be in right now. And I guess my options are either trust the doctor or to go completely insane worrying about this.

Thank you, you have been so very kind and it made a big difference to me whilst I was waiting and worrying sick.

@Somuchgoo and @Kirbert2 I also wanted to say thank you for your support and advice. You are absolutely amazing for offering advice to others with everything you have been through.

@Kirbert2 it really helped to hear your story and knowing how treatable lymphoma is. With all my heart, I will be thinking of your boy and I am sure he will do great & stay completely cured!

@Somuchgoo I totally know what you meant when you say you have no choice but to deal with things - but I also feel that you have been dealing with it with a way that shows you are a strong mum who is showing up for her child and for others. And I am really not sure I would be capable of that myself. I am sending the biggest, strongest, bestest, cosmic energy your way & praying that you receive good news. When do you hear back?

Thanks so much.

For context, now keep in mind that my son also had septic shock when he was first diagnosed with lymphoma. His LDH levels were 600+.

All the best to your boy. Hopefully no more scares now!

Many years ago my 2.5 year old DD presented with lots of random symptoms loss of appetite, fatigue sweats and generally droopy.

My GP examined her and pointed out lots of swollen lymph nodes all over he said he would send samples to hospital and ‘ get the ball rolling’ so to speak. He said it looked like Leukaemia. I was just like you but with no access to Dr Google very worried.

Few days later I received a call from GP’s receptionist to say very sorry but you need to come in your child has glandular fever! She was shocked that my response was I am SO pleased.

Turns out it was unusual in such a young child and she just needed rest.

Hope your little one improves soon

I'm not sure, so I'm like a teenage girl waiting for her boyfriend to ring! I'm used to it now, I think I can fake not being stressed reasonably well, occasionally even to me, but it's pretty obvious really. Like living in a permanent state of fight or flight. She should be okay long-term. Just we don't know what the road will be in the meantime.

I remember the night before diagnosis, having this very strong sense, I was approaching a sliding doors moment of life. I was fairly sure it would be fine, but knew was that it could potentially be my last meal, my last shower, before life came crashing down. And it did come crashing down, and it was rough as hell, but we came through it, mostly intact.

I'm delighted that your sliding doors moment turned out better. I understand the ongoing paranoia, I have that thinking something else might be wrong, like all the time. It's hard to step down from when something doesn't feel right. Then everyone says a mum's instinct is everything and you think well- I must be right then, but sometimes it is just worry I guess.

Don't be afraid to ask again or from more follow up if things get worse or if he continues to see unwell. It might be helpful for you to work out where those lines are where you would seek help, so you can keep your paranoia in check! For example, 'If in 3 months time he seems worse. I will go back to the doctors, but unless there is an emergency or worrying new symptoms before then, I will not.'

Best of luck

How are you doing @Wobblyheart? been thinking of you today and hoping you’re ok 🌷

Aww, thank you. I am feeling better but have to say that still very uneasy about it all. As I still dont have explanation for his eye pain, weight loss and the sweating. I doubt paed will be calling us back so I am thinking about booking an appt for him in about 1-2 months time with the GP to see where his weight and general wellbeing is and take it from there if any changes.

In the meantime I have decided not to check and prod him as he started asking why I was touching his neck!

I think that sounds a very good plan, OP. Have you taken your DS to an optician to check if there was an explanation for the eye pain?

I have! It was nearly impossible to find an optometrist who would take such a small child and I think we managed to get it by luck. (turned out they dotn take children under 4 usually but the receptionist made a mistake booking us in and then the optometrist was kind enough not to cancel). No issues with eyesight or refractive issues. Normal optic disks and back of the eye. So no explanation there.

Maybe he is just too sensitive to everything. Maybe too much screen time and eye strain. Maybe it is headaches.

That’s good you got his eyes checked. Do you know, it’s weird but my DD has also complained of “itchy eyes” over the past few weeks, more so when the weather was warmer. Im wondering if it was hay fever?

I can't see any redness or anything like that. If it is something innocent I bet it is just his sensitivities. There is possibility that he is neurodiverse, probably not autistic but adhd maybe since I am awaiting my diagnosis. But he is super sensory driven and aware. He will say that planes are too loud for him, doesn't get distressed but talks a bout it a lot. Hates labels on clothing, will kick up a fuss if his trouser ran up. Tells me about his itchy bum and any other sensation so who knows... but he does seem to be in real discomfort somtimes with it. But maybe it's eye strain. We had far too much screen time recently

@Wobblyheart I have hay fever & even with my prescription meds and an air purifier in the bedroom my eyes have been itchy and almost glued shut for the past few weeks, reacting to the pollen, so it quite possibly could be that.