Something not right with 3yr old

[BethMck]

I need some help please, my 3 year old son has had a pain in his right knee for over a month (first day 17th dec) it has been going on every day since, intermittent pain and inability to bear weight on his right leg, some days he will just have a slight limp now and again and say his knee hurts, sometimes he will ask me to pick him up because his leg hurts, gps and a&e doctors aren't concerned as he otherwise looks totally fine. Over the past 2 weeks he's complained of pain in his left leg as well as the right and twice hes said his right arm hurts too.. other symptoms diarrhoea, looking off colour and saying he's tired and needs to lie down on the sofa to rest, these symptoms come and go every couple of days, he has had a blood test that came back normal apart from low in vitamin D. I have read alot of stories from parents who said their child was completely healthy and initial blood tests were normal before other tests were done and turned out to be cancer. Obviously this is my concern and I've expressed this to doctors who dismiss me by saying he looks very healthy so I wouldn't worry about it being anything serious, he has been referred to Pediatrics 2 weeks ago but I still haven't received anything from them with regards to an appointment. Went back to the gp today to discuss the new pain in his left leg and right arm, he wasn't concerned and said to just wait for the pediatrics to get in touch he did mention juvenile arthritis as a possibilty. Everyone around me is telling me I'm just worrying about nothing and the doctors are making me feel like I'm being stupid. I really want all the tests possible to rule out cancer. But I'm being told if doctors were concerned they would be rushing him through for tests. My issue is I had a cousin who was told her symptoms were likely nothing serious and for months she was denied tests, when she finally had tests done she was diagnosed with cancer, due to the delay in diagnosis she sadly lost her battle a year later and passed away at just 22 years old. AIBU in thinking I am being fobbed off and do you think my anxiety is taking over? Should I trust the doctors and wait for the pediatrician to contact me or should I keep pushing for tests? I feel like I'm going crazy, is this an actual parental gut feeling or am I looking into this too much and getting paranoid??
So sorry for the long post. Please help a mama out xx

It is definitely worth asking the question. As previous poster said a paper trail could help here. Let them know how worried you are, reference your cousin and ask to be put on the cancellations list to be seen ASAP by the paediatric team. If your son is in pain, just take him to A&E. Hope you get answers and he is feeling much better soon.

We had similar with my son. He kept complaining of pain in his hip, he would end up limping and reluctant to weight bear. It would come and go. We went to the GP a number of times and nothing seemed to be diagnosed. They said if the pain worsened we should take him to a&e. One weekend he was in pain again with his hip so I took him to a&e. They did X rays, bloods, and some other tests. They asked questions about night sweats, weight loss etc. we had a follow up with paed orthopaedics who went through all his results and reassured me that they didn't think it was anything sinister. They diagnosed transient synovitis (inflammation of hip following viral infection). I'm glad I went to a&e.

If he’s had bloods And they are normal (except vit d) then he doesn’t have leukaemia.

People Suggesting going to the GP and demanding to be seen daily etc what will it achieve? Clinically they can not find anything wrong at present they have referred him, he doesn’t not meet the threshold for an urgent referral so there’s nothing else they can do no matter how many times you turn up. A private appointment may be what you need.

Totally understand your question, I have read leukemia stories of toddlers who were totally fine and healthy, had completely normal blood tests and the only symptom they had was leg pain and a limp, not just one story but quite a few, sometimes children present really obviously unwell and sometimes they look completely fine. I think I want a scan to check there's nothing going on like a tumour or something in his leg. But also not even for cancer but for other things they might not be able to diagnose without a scan if you know what I mean? I really have dived into a hole of omg something bad is going on and it's hard to see past that without a definite answer, I'm grateful he's been referred I just really wish the wait times weren't so long, it is likely I'm just being paranoid and I really hope I am! I don't actually have the number for the pediatric department but surely can't be hard to search up, if I find it I will call and ask, thank you for that

About 10 minutes 😂
He had something called Severs in his heel, that took a 4 hour A&E visit followed by seeing a physio to get diagnosed. That's what they later said triggered the reactive arthritis, it's an autoimmune thing.
He had a routine follow up physio appointment a few weeks later and we raised the issue of him now having pain in his knee. She sent him straight up to see the pediatrician on children's ward who gave the arthritis diagnosis.

Presumably if he could not weight bear they did an xray though?

This would rule out a tumor.

Oh!! That's very quick haha! I'm glad you managed to get a diagnosis so quickly and it wasn't anything serious! Hope your little one is doing well now 😊

No problem. I think it’s important to try and not lose sight of probability. By which I mean eg a headache could be the sign of a tumour. Realistically it would be quite specific with many other symptoms a doctor would find on questioning and examination. Almost every single person having a headache is just having a headache. A fair few will be having migraines and need further treatment. They will be referred and there will be a wait. That’s frustrating but not dangerous. Once in a very blue moon there will be someone who presented completely not as expected who is actually very unwell. But that is more akin to eg having a plane crash. If several doctors have seen and examined your lovely boy I would feel very reassured that while something may be wrong it is not something that beyond frustrating that there is a wait would be getting worse so quickly that the wait caused harm.

It is so hard when you’re worried about your child and I think all of us have had moments were they scare us and you can’t help but be worried about worst case scenarios. But you’ve done your job as mum and it sounds like you did it thoroughly. You got him seen. You got him initial tests which essentially rule out your biggest worry (despite online ‘plane Crash’ scenarios) and he will be seen by specialists who can decide if/what further tests he may need to explain and treat his symptoms x

The issue I'm having is the weight bearing is intermittent, the pain comes and goes a few times a day, when he's been to the doctors he's able to walk fine so had no xray, he holds his leg bent at the knee and refuses to put his foot to the ground and will hop around or crawl on all fours instead, as long as the knee is bent, he won't let me straighten his leg when this is happening, then he can walk run and jump again once the pain passes.. I have multiple videos of him doing this and have shown doctors, but when he's in their office walking normally they see no need for an xray or scan..

Having said all that and as I’m sure the doctors you saw will have said, if something changes and he develops more symptoms or things are getting worse absolutely do take him back to the gp who can update paeds to help them decide if he needs to be seen faster.

Worth checking if there’s children’s physio in your area.

Some have advice line sessions.

He's a not so little, 6ft2 teenager now!
If it helps put your mind at rest he was my one who had everything.
Twice suspected meningitis in his first year
Hernia at 18months
Pneumonia at 3 so serious he spent 3 weeks in hospital and was blue lighted to a different hospital during that time
Tonsils & Adenoids out at 4, they were causing sleep Apnoea
Adenoids out again at 6 as they grew back and the Apnoea came back
Fractured ankle at 11
Severs disease at 12
Reactive arthritis at 12
Multiple visits for injuries throughout that time

He was 15 before we managed 12 months between hospital admissions 🙈
Despite all that he is happy, healthy and in 6th form!

@BethMck it might be worth calling the GP secretary tomorrow and explaining your concerns, you could call the Paediatric clinic first to check likely wait times and ask to be redirected to a different hospital if they have a shorter wait period, you could even request to be seen at a private hospital that treats NHS patients under right to choose although that isn’t the case for everything I think and sometimes the wait to be seen if not paying private is much longer than if you just stayed with NHS clinic, worth checking however

Yes!! I absolutely agree with you! I usually always jump to the scariest scenario first, I'm not one to take my kids to the doctor at the slightest sniffle and I usually wait it out and realise actually yes they are fine and no doctor was ever needed.. but I think this with the random pain and random bouts of diarrhoea and sometimes looking off colour but then other times looking and acting completely normal, for the length of time it is has got me in a choke hold.. for the most part I'm seeing things exactly how you are, and I think great everything is fine we'll hopefully get to the bottom of it soon or it'll just sort itself out and all is good, then part of me thinks but those tiny percentages do happen to people, even when doctors convince you it isn't serious! And then I'm all in a panic again thinking he could be one of those tiny percentages! I totally get what you're saying though and agree that I probably am just overthinking things and getting worked up. My mum always says the more we worry the less there was to worry about, she's usually right too! 😂 x

Can you film the problem with his leg so they can see it? Have they checked his calcium levels?

Is private an option!? A private paedeateician consultation will be c.£200. Then cost of tests and s followup which of often slightly cuts cheaper.

Re getting hold of the paedeateic department, the hospital switchboard should be able to put you through. Ask if they have a cancellation list they can add you to.

Transient synovitis is what my daughter had OP and she had real trouble walking for months it could be that

Also you could take photos and video of when he's acting lethargic, looking pale etc. I'd also keep a diary of symptoms.

I had so many aches and pains and felt exhausted. Turned out to be vitamin D.

However I would absolutely be pushing for most urgent referral and everything possible. No one knows your child like you.

I totally agree you need to push for
review by Paediatrics.

Go back to the paediatric a and e. Once you've presented 3 times it is a red flag to be seen by a more senior paediatrician. The three things you're worried about, leukaemia, bone cancer, and juvenile arthritis are all serious and need looking into now, not in 8 months (my daughter just had a routine paediatrician appointment and it took 8 months from the time of gp referring because they're so swamped). Ask to see a registrar in Paediatrics and if you're not satisfied with the explanation I would ask to see a consultant in Paediatrics.

Good luck, you're being an amazing mum advocating for your child. It's not easy when doctors are not taking you seriously but I have some experience in this area and I definitely think you're right to keep going back.

Oh my good God!! He certainly kept you on your toes didn't he! I have 4 (3 Yr old is my youngest) I've never had anything like this with any of them.. my 3rd child has asthma and has been hospitalised a couple of times with that but other than that I've never had such a scare with any of them, so I think maybe this is why I'm so worried about all of this random pain and limping! I think when we are told this is a symptom that needs prompt investigation and then that investigation doesn't happen promptly that's where the frustration comes in and the time to overthink and start to panic! I'm so glad your huge lad is doing well! 😊

I like the sound of your mum. ❤️

Ps Transient synovitis is the same thing as irritable hip and the same thing as reactive arthritis (and is a non worrying diagnosis). However generally this illness doesn't switch which joint is affected (and also doesn't cause tiredness) so your son's symptoms aren't typical for this.

Absolutely, I had to push for investigation for most of those things
I forgot medical circumcision, he had to have that too 😬
Thankfully my eldest had nothing go wrong!
Just keep on at them until you get somewhere, you know him best x

Is he hypermobile? Has that been discussed and ruled out?

I have filmed him numerous times and shown them, they just bend his legs about, watch him walk (completely normally) and send him on his way, I know they have referred and I'm grateful for that I just wish they had wanted to see him urgently! Unfortunately private just isn't an option for us, but I will call the hospital and ask to be put on a cancellation list, thank you. Also they did check his calcium levels, bone profile, literally everything so I don't know why I'm still so worried tbh!