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.

I'm so sorry, OP. I don't think your husband is bad in the least, and that's not what I meant to imply. I just sensed that he didn't care enough. My error. I am sorry.
It's actually very understanding of you to give him his space to approach this in the way he best handles it. You know him and love the bones of him. I'm just a stranger on the internet! I'm sensitive to people's responses because I was married to someone who had checked out and was not remotely interested or involved in our children's health. This came back to bite later on. I was projecting my history onto your current situation and that was wrong of me.
It sounds like that's not at all where you and your husband are at. Forgive me for misreading your situation.

Courage for the ultrasound. Do it. Get it dealt with. Face the lion in the den knowing that there's EVERY possibility that it's only a mouse you're up against. I know you fear the worst but... what if everything is ok and what you get instead is reassurance? It's worth going through with the ultrasound, hard as it is to do alone. I feel your fear. I've been the mum alone next to the scanner on many occasions this past year. And it is tough. You hold your breath. But at the same time, trust that, for the most part, things aren't sinister and everything will be ok. 💐

He is going to feel awful though if they did find something and he wasn't there.

If he couldn't have the typical chemo regime, they would adapt it for him. For my son, his bowel didn't work correctly so he got less of one chemo than he usually would but also got a chemo that he wouldn't usually get for the stage his cancer was. In the end, his oncologist said that his chances of relapse were just like any other child who had the typical chemo regime. Very unlikely.

It's awful that they haven't even read the letter yet.

Op if it helps reassure you still, my ds is 3y4m and sweats profusely in the first hour of his sleep.

Oh no, please, fo not apologise, I am really grateful for your advice and support.

My inner strength is so depleted right now, it helps to hear someone say words of courage to me and share there experience. I really appreciate it.

Thank you so much for telling me, it is so good to hear that it sounds like there would be options if need be ❤️

Thank you, it does help. I am still hoping his increase in sweating is the warm weather as he has always been a sweaty child but now it's just so much worse.

I so feel for you OP - when my daughter was around 1 year I noticed a similar but different constellation of symptoms in her and was convinced she had a serious illness. We were back and forth to the doctor and although it took some time they took me seriously and she had testing which confirmed that fears were completely unfounded, and all the symptoms were either nothing or lingering from a previous illness e.g the enlarged nodes and high temps. She is now almost 4 years old and perfectly well touch wood!

But I was SO anxious, I couldn't eat or sleep or think of anything else. Propranolol really helped that phsyical panicked feeling subside which allowed me to think more quickly and look after myself a bit better. Would you consider medication? Sounds like you a spiraling a bit so perhaps it could help? Take care yourself and sending well wishes to you and your boy 💐

Aw, thank you for your reply. I am so glad that all turned out well with your daughter. ❤️

I will definitely consider medication. Up until yesterday I was still technically pregnant, but I can talk to the GP about it now. It's funny how we just neglect ourselves when we are worried about little ones. I can't say my appetite has been great at all...

Sweetheart, I am so sorry to about your loss. You are going through an awful time.

and now this worry about your son.

please, try not to panic, easier said than done, know. He is on a 2 week wait. You have a scab booked. No doctor has yet rushed him by ambulance to hospital.

his weight loss sounds almost not worth mention - it's minor and on different scales / times of day. And after not eating due to illness.

if it helps. I've had a palpable lymph node in my neck since I was 21 and had tonsillitis.
I'm now in my 40s. My DD also used to sweat like that from age 0-4ish. She always left a big wet patch from her head / neck, and woke with wet hair. Just like your photo, often much bigger patches. And you say he's always been sweaty. And if you're in the UK, isn't it unusually hot?

take care xx

Hi OP, sorry your having such a worrying time . My son also sweats in his sleep especially the first few hours his hair is wet sometimes .

Blood Cancer UK also have a helpline. Maybe give one of the nurses a call and chat over his Symtoms they may put your mind to rest and/or be able to offer advice on chasing hospital, tests etc. As it seems to be blood cancer your most worried about.

How are you doing, @Wobblyheart? Hope all is OK

Awww you are so sweet to ask.

I am really down as my son has noticeably less energy and appetite in the last couple of days. He is just eating carbs mainly /only and sweets and fruit ans not interested in veg or meat.

Went out with him today and he had a lovely 10 mins running around the lawn, but was slightly out of breath from it. Then after a little play at the playground he had a buggy ride and then complained of "wobbly legs" and wanted me to carry inside rather than standing on his legs. All I see is red flags left and right.

I am still hoping there is a benign explanation for this all but have found a trusted source (academic paediatric journal) which says presence of supraclavicular node led to cancer diagnosis in 75% of those children.

Try to keep things in perspective, the appointment will be through soon, and there are lots of innocent explanations. If they were that worried, he'd have been seen by the hospital the same day. That's not to say there any guarantees here obviously, and I'm keeping my fingers crossed

Its also hotter than the sun today. Most of us aren't eating as much, are tired etc. Kids are no different. I wouldn't read anything into feeling lethargic in this kind of weather.

@Wobblyheart bless your heart. As a pp above me said, these symptoms may be innocent red herrings, connected to an overlapping virus / the heat. My DC have been out of sorts with the weather this week; my DS actually has a stinking cold! He is the one with the enlarged lymph node on his clavicle.

I am so sorry you are going through this; you are one day closer to an answer and Im thinking of you and hoping all is ok with your darling boy.

Did your GP recommend a blood test in the meantime time prior to seeing the paediatrician?

Thank you.

I am just losing hope. He has started itching today all over. First time I am seeing jt but just going at his back and legs today.

GP wants a blood test but they can't do it on a small child. Only hospital can so they have requested it through the letter (which still hasn't been read).

Hopefully that private scan will give you some answers. Did you say that is coming up quite soon?

Keep writing down all of his symptoms to keep note of them.

It is, it is this Thursday but I am not sure that I have the strength to take him alone. It will he quite a journey and if they confirm my fears I just don't know how I will get I us back home. It's only the scan place so no one to talk to and I am getting overwhelmed just thinking about it. I know this isn't right so am just trying to build up a courage.

He keeps complaining about his eyes every day and I can't help but think now that there might be some sort of tumour behind them.

I am so deeply sorry that you had to go through all of the worrying yourself and so glad that your son has completed his treatment.

Knowing either way will be much better than not knowing and working yourself up when hopefully, it isn't anything like that.

What kind of scan is it? There's still a possibility that they won't know for sure, they might see if something is there but if something is there, they would likely want a biopsy to confirm what it actually is and so they can give correct treatment.

While I understand your deep concern, on the basis of all you have written it’s highly unlikely to be cancer. There are benign explanations for all his symptoms and nothing that is an indubitable red flag.

In the nicest possible way, dig deep and crack on. It doesn't matter if it's hard, if you need to take him for a scan, then you do it, because that's what you need to do.

I'm not saying that from a place of ignorance, I've been where you been,in that fear. In honesty, I permanently live in that land of fear (currently waiting to find out if child's brain tumour is growing again...).

It's ok to wonder how you're going to manage taking him, wonder how you'll keep yourself together and your worry in check, but it can't interfere with what needs to be done.

Also, live your best life now. This week is going to be excruciating whatever, so make it a good one, in case there are tough times ahead. Distract yourselves, do fun things, just get through it.

Are you sure you want to go to this private USS? It seems to be a big point of stress. What support and advice do you get from the scanner? What information are they able to give? IF they find a worrying looking LN then what? Who will see you and talk you through what it means? What are next steps? What other tests are needed?

I think this scan could do more harm than good. Just wait for the urgent paediatric referral you’ve already got in the pipeline.

so far you have not described any red flags. The LNs you have described do not sound enlarged.

There is that. You should be seen within the NHS promptly by the sounds of it. If there is a serious deterioration then go to A&E.

If I'm honest, I'm more worried about your mental health than your son's physical health at the moment.

Sending you big hugs. You’re going through a lot at the moment.

Sending hugs xx

Just had a call from the hospital and they have booked my son under "rapid access" - he will be seen this Wednesday. I am glad we are going to see someone soon but also am completely sick to my stomach as I think this is the most urgent 48hr pathway so they were concerned enough for that.