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 was 7 years ago now and in the midst of Ur I had his baby sister so I think longer than it should have without us realising it was all connected. When you get him seen again just query hsp as it can show itself in different ways. But my son ended up quite poorly. He's completely fine now nd it never came back.

My DD had complications from a surgery, I called the surgery team daily for help, they did nothing. She was getting increasingly worse everyday, I was at my wits end. In the end I complained to PALS, they fobbed me off and did nothing. I wrote a huge complaint to the head of the hospital, I had an appointment the next day and they managed to resolve the issues.
By this point OP I think a huge complaint is the only way you’re going to get help for your son and I rarely complain as I find it embarassing, just please keep fighting.

This is me, I really hate to complain and will just keep going back and voicing my concerns but they seem to be falling on deaf ears! Im shocked that they think it could be some kind of injury and are leaving him in pain for another few weeks! Surely if they thought that they'd want to know so he's not causing more damage to it!! I'm obviously worried about the worst case scenario and need that ruling out first for my own peace of mind but they seem to think because he looks ok there is nothing serious going on.. I know a lady who has stage 4 lung cancer and to look at her you wouldn't know at all, how can they say something so confidently when it is impossible to know! I really do hope they take me seriously soon I am going to call the peads first and see what they say, hopefully that might push them along a little bit

I am going to give this a go, I feel like nobody is listening, but even if they don't suspect cancer and think it's an injury then surely they'd want to get that treated so he isn't causing more damage! It's so frustrating having to wait so long for answers especially when I know something is bothering him and I just can't be sure that it's not serious. The viral infections and rashes with the leg issue is what is making me nervous if they are connected then they are both signs of childhood cancers but the doctors just don't seem to want to rule that out because he looks ok

We found PALS very good, they helped with my Dad years ago when we were going around in circles with the hospital. One complaint to them and it was all sorted.

Try the paediatric secretary first but if no joy with them then seriously think about complaining. It’s unacceptable to leave a child in pain waiting for months and month when it could potentially be something serious 😡

I agree, if no luck try PALS first for sure!!

Hi my daughter has JIA was diagnosed at 3 years old after having Covid she also started off limping and just generally unwell. The team she is under ran blood tests and her inflammation markers were high and she was started on treatment really quickly. We had to fight for her to get seen and took numerous visits to the GP until someone finally listened to us and we seen the paediatric rheumatologist. Hope you get some answers soon it's so worrying! X

Start writing a complaint now, lay it on really thick with all your concerns. If you don’t hear anything from the secrateries in a few days then send the complaint. For risk of you sue-ing the hospital they’ve got to do something! They literally are negligent!

Honestly this is all getting a bit much now.
Ops son has an urgent referral.
In order to speed this up she has been to the GP multiple times, And E multiple times, and is now being advised to exaggerate, and make complaints via PALS.

OP has even been told what they think the cause is, but only a specialist will be able to make the diagnosis, A specialist who her son will see.

I had kind of dismissed this, because they say JIA symptoms are: pain and swelling in joints.. warm to touch.. symptoms appearing first thing in the morning and easing off throughout the day.

He's had a blood test which came back normal so my thought are it could be an injury and he's just having winter bugs coincidentally at the same time or something more serious like early signs of cancer.. either way if it is an injury or something serious why on earth are they making him wait so long to find out and get it sorted! I don't want him to be damaging his knee further if that is what it is!

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!!! So now I have to do more chasing to the GP to get it sent as urgent! This is getting out of hand, me having to go back and forth to speak to numerous people to be told it could be this it could be that, they cannot tell me it definitely isn't something without the scan.. I'm getting sick of chasing everything and going to one place to be told to go to another place, going to that place and being told to go back to the place I started!! Either way a pain and limp in a child needs an urgent scan to rule out serious things and diagnose to get the treatment and prevent things worsening! But the waiting time for an urgent appointment is up to 8 weeks! When loads of childhood cancers start out with an unexplained limp nobody wants to be waiting 4 months to be told whether it is or not.. The NHS is an absolute shambles due to the government but when simple miscommunications are happening and delaying things further then it becomes a problem. It is my job as a parent to take him to a doctor for help, which I have multiple times, it is their job to follow their own guidelines for a persistent unexplained pain in a child's leg and send him to the correct place the first time, this would have happened the 2nd time I took him to a&e but they sent me to minor injuries instead! 6 weeks he has been suffering and lord knows how much longer he will be suffering, the secretaries, and doctors sending me on a wild goose chase is sending me over the edge! I have never exaggerated or lied about his symptoms, they have seen video and picture evidence of his limp and the rashes but they don't think the 2 are related.. but they can't tell me why they don't think that, they can tell me what they like but without proof from a scan they can't diagnose him just the same as I can't or any of you can't, delaying it could be causing more damage

@BethMck Your GP can ask for it to be made urgent, but officially it is simply a request. But the hospital have many many parents who all want their child to be seen tomorrow. That is why it is the hospital, not the GP who decides whether it is an urgent or routine appointment.

I know you have never lied or exaggerated his symptoms. I commented because you were being advised to by some people on here. I had to post and say this advice was wrong.

OP has explained everything in detail, if you had suspicions that your child may have cancer or serious illness would you just leave it? I have had to fight for my disabled daughter her whole life, if I hadn’t she may not be here, and that is not an exageration at all. If the hospital is negligent (which sounds it) then a PALS complaint is the least of their worries.

My advice is correct. The hospital deserve a complaint at this point. OP ignore this nonsense.

@BeLilacSloth My nuclear family have various long standing serious health issues, including a number people have been born with. I am no stranger to hospitals. If you have something rare, it is not unusual to have to fight to see an appropriate consultant. But I would shut anyone down who advised me to lie or exaggerate as has been suggested on this thread. Doing so will simply be noted and any subsequent issue may not be taken seriously.

I have not advised OP to lie!! Where have you got that from?!

And actually everyone in my family gets a same day GP appointment when we say we need to be seen taht day, because the surgery knows if we say this, it means we really do need to be.

You advised her to exaggerate.

No I didn’t!

You said to lay it on thick, which means to exaggerate

But I do not want to derail OPs thread, so I will leave you to it.

I can totally understand what you are saying, and sometimes there are delays because there are just too many people needing these underfunded and understaffed departments, but my issue is that being sent from one place to another and people sending the wrong requests, meaning I'm back to square one chasing it again is extremely frustrating.

I think PP was advising me to complain and explain all of my frustrations (lay it on thick) as in don't hold back with how frustrating it is and how I've been going round in circles and the very real possibility that this could be a serious issue that needs seeing to urgently and not in 8 weeks time, I don't think she was telling me to lie or exaggerate at all, just to get my point across to get us to the right place

@BethMck Fair enough.
I do not think the wrong request has been sent. The GP has asked for the referral to be made urgent. It sounds like that might have happened briefly because the previous routine appointment was cancelled. But a consultant would have reviewed that, and has changed it back to routine.

Lay it on thick does not mean exaggeration. OP has an already strong case, she doesn’t need to exaggerate.

I also advised some time ago that you could post in the reddit subforum askdrs. There are drs there who give patients advice and explanations.

Okay fine, I misunderstood.
But the consultants do not agree OP has a strong case. They have twice allocated her child a routine appointment.