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

The GP has requested it as routine, so there has been a miscommunication that I will have to chase up and rectify. Because when I asked to speak to the gp that was dealing with the issue, the secretary just said she would take the letter and get the doctor to send it. The first gp knows and agrees that it should be seen to urgently and said he would discuss this with the peads! The a&e doctor that spoke to them said peads agreed to upgrade it from routine to urgent! It's all driving me insane

Well lucky you. Where do you live? Because round here you’re lucky to even get through on the blasted telephone to the GP. The surgery even know you and your family personally? Bloody hell.

My family have a number of very rare health conditions.

You’re doing yourself no favours here.

I have just spoken to the peadiatric department and been told the referral was made as routine 2 weeks ago, then cancelled and made yesterday as ROUTINE!!!

Why was it cancelled? Absolutely ridiculous at this point, I’m fuming for you. I agree with @BeLilacSloth I think it’s time to put a complaint in. Maybe start with PALS at the hospital he’s being seen at.

It's annoying to have to wait when the poor boy is in pain but for NHS services at the moment 8 weeks is pretty good. I had to wait 8 months for a scan at one point. Ended up being diagnosed with a neurological condition. I'd been literally sobbing with pain for 2 weeks straight, no let up. All the GP could do was prescribe me tramadol and wait for the referral. Service are beyond stretched.

The fact that it can change legs makes it unlikely to be an injury, more likely a deficiency or something systemic. I wouldn't jump immediately to cancer if his bloods came back normal. Leukaemia is normally immediately evident in blood tests.

It was cancelled because it needed upgrading to routine, but they have referred it as another routine 🙄 going to speak with gp tomorrow and see what can be done, if I don't get anywhere after that I'll just have to wait it out

I get all that, just with it going on for so long and they can't give me a definite answer as to what it is, other than guessing! When leg pains can be a symptom of some cancers, not just leleukemia and the random rashes he keeps getting but like I say those might just be coincidentally happening at the same time as the leg issue and it's not actually related! He has complained of pain a couple of times in the left leg and right arm, and the back of the head when he woke in pain with a temperature last week, but he is poorly alot and could just be his body reacting to a lot of viral bugs he's been picking up! I don't know, and neither does anyone else until he's had a scan, so I'll see if the gp can send the upgraded urgent referral tomorrow and if not then I have no choice but to wait and hope whatever it is doesn't get any worse in the meantime

This must be so frustrating I hope you get some answers soon

Does the rash blanch?

Yes it does, and it appears suddenly and lasts a few hours before it goes again, mostly on his arms and forehead, then the other type of rash which looks like a viral rash has appeared on his arms back and stomach a couple of times, the doctors don't seem concerned about this though they described it as a possible lymph rash, I'm not sure what that means, maybe another word for a viral rash?

My DD was urgently referred by the GP to paeds for limping. I was told that it was all lined up but that we had to check-in via A&E purely for paperwork purposes. 27 hours later we were admitted to the paeds unit. All the while my DD was in agony sitting in a wheelchair in a paediatric waiting room. It was a complete joke.

Aside from the shameful wait, it turns out that she had transient synovitis, which is where a viral infection settles in the hips (I’d never heard of it). They checked to discount more sinister causes and then we were sent home (delirious, by this point).

Omg 27 hours!! That sounds like my idea of hell! Do you know how long it lasted? 6 weeks ago my son randomly couldn't bear weight and it has been coming and going multiple times a day since, doctors first said possible Transient Synovitis so come back if he's not fully better in a week.. 6 weeks later I'm being told it might be Juvenile Arthritis or a toddler fracture but they don't know because they haven't so much as xrayed him! I'm glad your LO had nothing serious, the pain sounds much more severe than my sons, he hasn't really cried about it, just sort of shouting out ouch and saying I can't walk my knee hurts and refusing to move it, as time has gone on its more of a subtle limp or standing on his tiptoes or walking very slow and asking me to pick him up because his knee hurts! But it's still happening daily and they still don't want to scan him any time soon 🙄

My son's transient synovitis lasted a few weeks. He's had it a couple of times.

Please get a copy of your bloods, not just for vitamin D. You are saying bloods are normal without having seen them. Mistakes can happen, it is worth getting a copy and confirming everything is in range and correct ranges used. It is something practical that you can do whilst waiting/pushing for referral/cancellation. Or get a private appointment and ask for bloods to be reviewed and for confirmation that all the appropriate tests/bloods have been carried out to rule out everything before a scan. Or book an appointment and ask the GP has coeliac etc been tested. These tests can be happening whilst waiting for the scan. Good luck

My daughter has just turned 5. She had been complaining on and off for months about knee pain and feeling tired.
She would often insist on using the pushchair on shipping trips or asked to be carried.
I requested a Dr’s appointment and we actually saw a physiotherapist.
He asked her to perform 2/3 different exercises and diagnosed her almost immediately with hyper mobility. It’s caused by the bodies failure to produce collagen. The joints over flex making them very painful and tired.
We are waiting for a rheumatology appointment to see if it is just hyper mobility or caused by Ehler Danlos syndrome.
It runs in families and appears to be from DH’s side. DH grew up with ‘clicky joints’ and being very flexible.
Might be worth investigating.
Hope you get to the bottom of it soon. Xxx

So this is what I'm going to do tomorrow, I want to see the first gp I spoke to as he was the one that agrees a random persistent pain and limp in a toddler needs investigation as there are many causes for this, some of them are serious! I am going to speak to him about the miscommunication regarding the referral and also discuss his blood results and ask him to tell me they have 100% ruled out cancer and see how he feels about my son having to wait so long with a "suspected" injury to his knee. I'm hoping he will then sort the urgent referral and get things moving, I don't think I can do anything else at this point, hopefully the peads appointment will be brought forward somehow and we can get some answers. But as some PP have said if peads don't think his symptoms are urgent then they won't accept the urgent referral. I dont get how a suspected injury that's causing problems and possibly more damage can be left up to 8 weeks. They don't seem to think the leg and the other symptoms are related so I think that's why they are dismissing the cancer worries I have. I really hope it does turn out to just be a vitamin deficiency causing his pain and winter bugs affecting him a bit more this year 🤞

They don't suspect this as they say his legs, ankles, hips all move as they should and he doesn't seem over flexible etc! I don't know of anything like that in either of our families and he's never had any mobility issues from birth. It's so frustrating that there are so many possibilities, some of them are scary and that's why I feel so restless when it comes to getting appointments but I guess I just need to sit tight, once I've spoken to the gp again tomorrow and gone through all his symptoms and got him to sort the mistake with the referral then there's not much else I can do other than wait and hope it's something very simple to fix.. all this worry could genuinely be for nothing in the end, it's just the length of time it's been going on is why I have that question hanging over me and feel like I should push more! I've done all I can do though really.

Hope the gp is helpful and you can manage to speak to the right one tomorrow

If it was me I would get the results today and go through them all very carefully and query any possible anomalies here in preparation for your GP appointment as you will likely only have 10 minutes with the GP which may mean errors are not picked up. Take a check list of everything you want to discuss to the appointment. Take another adult with you to write everything down especially if you have your son with you. Good luck

I'll be speaking to the doctor tomorrow, I'm not convinced we will get anywhere soon so I guess we'll just wait for the peads and see what happens, thanks for all your replies and sharing experiences so I can ask about certain things that could be a possibilty when I do see the pediatrician, then hopefully get some answers, but it seems there's nothing I can do to speed things up now unless of course there are any worrying changes. Appreciate all your help, fingers crossed I'll find out I've been worrying all this time over something minor and easy to sort once we know

Could you see a private physio while waiting just incase it's a mobility issue.

My dd got a lot of leg/knee pain she was a bit older like 9!ish we got referred to a physio said possibly hyper mobility although she didn't really have the signs for it . In the end they decided it was condromalacia which is to do with the cartlidge around knee cap. We were advised for her to take a supplement (I'm very sorry I don't remember which one probably a fish oil) and eventually it stoped.

She has had no issues for years tbh I think it was more likely growing pains as she had grown quickly and is tall but obviously that won't be the case for you.

Saw the doctor today (not the first one i saw that i wanted to see again), my son has raised lymph nodes 1 on his neck and one on his groin both on the right side, same as the affected knee, I told him I'm getting worried, he's still got the limp that is worse with exercise, he's still full of a cold that seems to be going then comes back, he's still getting weird rahses that come and go, I took a list of all his symptoms and showed him pictures and videos, expressed how concerned I am with all the symptoms together and he didn't want to rush the scan, he said he will send him for a different blood test to check his immune system and any infection he may have and check for coeliac etc, I told him about the history of cancers in my family but he didn't want to put him on the 2 week pathway. Peadiatrics are scheduled to read my sons notes on Friday so he said hopefully they will just send an appointment to go straight for the scan. I said the hospital suspect an injury so if that's the case wouldn't he need to be seen quickly as he'll be doing more damage to it, he just basically said the peads will decide how urgent his case is. So still no answers but ive done all i can now. Just hope the peads get him sorted quickly! Oh he did say my sons iron and vitD were borderline low so "just about on the low end" and has prescribed something for that.. just a waiting game for the scan now.

This sounds like a good outcome. Let the paediatric experts review the referral and the information.
I don’t think children have the 2 week cancer pathway like adults?
Clearly they don’t think it’s cancer which is obviously positive. With any luck you’ll hear next week about the next steps and you can start getting answers and your little one will feel better.

Children do have the 2 week cancer pathway. But to be on it there has to be potential signs the child could have cancer.