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

If your in London the Whittington hospital a&e is very good for taking any concerns seriously and doing all the necessary tests x

@Lexie365 any time a Dr has examined him he has been weight bearing and without a limp. It is intermittent, which is why they suspect some form of arthritis

Can you log on to the NHS app and see what blood tests they did and post the results on here. We can maybe make suggestions for other blood tests, and put your mind at rest about certain diagnoses given any results.

If there is any chance he might have been bitten by a tick, I would suggest a Lyme panel, but the GP might have already done that

Oh right. Sorry didn't read all the op's post's. I would still keep pushing though, my nephew also had leg pain and fatigue, was pale. Although when he had blood tests it did come up irregular so the fact the blood tests are clear is a really good sign. Just like I said better safe than sorry, so I wouldn't drop this op until more tests are done x

My son didn't have a temperature. He had some operation to test the fluid from the ankle and scans/x-rays. The orthopaedic specialist insisted on putting him first on the list and I don't know whether this was because he was young or the consultant was worried. There can be more than one reason for a scan to be lit up like a Christmas tree like his was. They were certain enough though that he had a bone infection that the orthapedic consultant insisted that he be treated anyway because it is better to overtreat a child who doesn't have a bone infection than missing treating a child who does.

My son was the sort of child who could vomit everywhere and then look positively chipper five minutes later and I think that kind of resilience perhaps fooled the paediatricians. He was in hospital with a drip and a partial cast and all he wanted to do was get in the ride in toy car and had me running after him pushing the drip stand down a corridor within a few days. (His brother was similarly resilient and was running up and down the corridors of a hospital after a general anesthetic and minor surgery a few hours before.)

I'm not saying of course that your son has a bone infection. And it was only his leg - apparently the infection can get in the growth plates and this is why it is more common in young children.

Right, that's why I said approx 1k will get her an appt and a CT scan, if she can afford that. 200 pounds appt and 450-800 for a CT scan, if appropriate.

The two appts I took my elderly friend to at a Nuffield last year were specialists - and it was 200 pounds. Dermatology for leg ulcers that refused to heal, and an ENT specialist for a nose/sinus problem.

But I agree no point going for a private GP appt - I've since read that she's on the paediatrician list.

If it were me, I would find a private hospital and ask the price for a specialist appt and how much various scans cost if they are recommended, like PET/CAT/MRI. If an appt and a scan was affordable for me, I would do it. (Google said 450-800 for a CAT scan, as a guide.) Should the scan show cancer, the private onc would then write to the GP who would upgrade the referral to urgent.

If it were me and if I could afford an appt and a scan, I definitely wouldn't wait on the paediatric referral since it's been marked non-urgent. If I couldn't afford it, I might ask grandparents to help out if I had that luxury.

If OP can't do any of the above, I would put my concerns in writing to the paediatrician dept. It's possible the GP bungled the message and it's possible that the person who made the decision about it being non-urgent was having an off day or just isn't very good. It can't hurt to write, and it might help.

Go to a&e and tell them everything you've told us and that new pain is arising every day

To be fair to GPs here it was actually a GP who suspected the bone infection and told my husband to drive him to the hospital immediately.

Yeah, somehow I feel A&E is the quickest route to a scan. That's happened for me before (not that I went there for a scan, but I ended up having one).

Argh, just read that OP has tried A&E.

Omg, I can't believe the difficulty you're having getting him the appropriate treatment!

I don't think you're worrying too much at all. I would feel exactly the same in your shoes.

Can you afford 1-2k for a private paed appt and a possible scan, if recommended by them? You can confirm prices with a private hospital before you go ahead.

OP, I just saw that you said his pain comes and goes and has been multiple times in recent weeks. Can you start to keep a diary of his symptoms and their dates? This will help when you talk to the pediatrician, as well as giving you a clear picture. He might have symptoms more or less frequently than you think.

Symptoms of bone infection in my little girl last year

Limp / stopping weight bearing intermittently
Affected foot hotter than the other foot
NOTHING else, no temperature etc

It was in the bone in the top of her foot so most movement was fine when assessed by doctors

Took over 6 weeks to diagnose 3 A&E visits and 3 GP visits. Finally diagnosed by the children's specialist hospital.

I'd advise going to a children's only hospital A&E and requesting an x ray

Good luck 😊

He has been able to bear weight though, just sometimes he can't

OP your post reminds me of an article I read about 10 years ago. Mum kept taking him to the doctors and hospital he was sent home. This little boy had special needs and non verbal so couldn’t say what was wrong but wasn’t well. I have 2 SN dc myself.

The day after he was sent home he collapsed couldn’t get up. So she called a taxi to take him to hospital. Not our local hospital though she took him to a children’s hospital in another county. Scans showed he was riddled with tumours. 2 days later he was diagnosed with stage 4 non Hodgkin lymphoma.

I had a cousin that died as a teen. Not cancer I don’t want to say because it’s outing. But i just thought if my aunt and uncle had been more like this mum my cousin would most likely still be with us.

Ring 111 or GP and explain that you think your son could have cancer, continuosly ring until they do something. If they don’t do anything write a massive complaint to PALS or the head of the hospital/ surgery. I know this sounds dramatic but if you suspect cancer you must fight for him.

Thank you all so much for your replies, there appears to be no warmth or swelling when my son has these pains and as its been going on for so long I think an infection would probably have started to show those kind of symptoms by now. Unfortunately we are not in a position to afford private health care and I really would have gone down that route by now if it was a possibilty, I appreciate the gp's i have seen have done everything they can, and I'm grateful he has been referred but I do not agree that this should be seen as a routine appointment so I think my next steps will be to call the pediatric department to find out if an appointment has been made and when this will be and hopefully request to be put on a cancellation list and voice my concerns, if symptoms persist i will go back to the gp and request things are pushed more urgently, if i don't get anywhere that way my only option would be a&e again. As for telling them there is a history of cancer in my family, it wouldn't be so untrue, as you know my cousin passed away at age 22 after being told its probably not cancer and a delay in getting the correct tests, I have another cousin who has a son that was diagnosed with cancer at 4 years old after months of being told its nothing to worry about they finally did tests and got the diagnosis, his only symptom was a strange bruise that wouldn't go away, although his bloods did show something slightly off! Thankfully he is now in the maintenance stage of treatment and doing very well, I also have another cousin who is currently having chemo treatment for breast cancer, she is 37 years old.. all on my mothers side of the family and I know doctors say cancer is usually not likely but it is more common than people think. I have no idea what is causing my sons pains and after suffering for over a month I want to be given a 100% all clear of cancer, as early detection is key. I am hopeful it is going to turn out to be nothing too serious but I guess until I know for sure that worry will always be in the back of my mind. When symptoms are persisting and injury or infection are unlikely I believe he should be xrayed and scanned to make sure all is not serious and then I'm happy to wait weeks/months for a specialist appointment. I appreciate everyone's replies and people trying to talk me down or give me other options, I think I will keep pushing and obviously report anything new etc. Xx I would also like to add my brother had testicular cancer at the age of 23, thankfully he was given the all clear 18 months after treatment began, this is why when doctors say it's likely nothing serious, I'd rather they were able to tell me it's 100% not cancer.

A slightly unorthodox method would be to turn to social media. In our local FB group, loads of people manage to jump the queue for medical appointments or treatments because they post it desperately online. Are there any local womens or mum groups you can join? If the group has about 5-10K members, you can almost bet there are doctors or wives of doctors in there too. In many cases they happily tell the patients to go to their own clinic or can arrange something out of hours.

The thing is, the paediatric doctor who saw you that time said to come back to A and E if it didn't get better. From their point of view they've not heard anything more so they'll presume you're fine.

You did rightly go back after a week but unfortunately got sent to minor injuries which I think has not helped as there are no paediatricians in minor injuries and the fact you had reattended was also less obvious as you were seeing a different set of doctors /nurse practitioners etc.

That paediatrician you originally saw in a and e would I'm sure be very upset to think that things had not improved but that you had been prevented from coming back so they didn't have a chance to look at him again. I have worked in paeds a and e and I would definitely want you to come back! Choose a quieter time of day (mid. Morning is best) and go to paeds a and e.

See this is what I've been saying to my partner, the first gp I saw seemed to take it seriously and sent me to a&e, the peads there said to go back to see them, when I went back I was sent somewhere else and told to contact gp again, the same gp I saw said he needs to be taken back to a&e and stress how urgently he needs testing, all the other doctors/gp's I have seen since don't seem worried and just seem to shrug it off and send me on my way! I just want answers and part of me feels like I'm not being heard properly but part of me feels like I've seen so many people now and most of them are just telling me to wait for peads appointment. The first gp is the one that knows this symptom needs prompt tests to rule out something more sinister! I'm so stressed with it all and just feel so bad for my boy. Is it something I should be making a fuss about or is it something that can wait! Who knows at this point, but I know that the NHS own protocol for a toddler with a persistent unexplained pain and limp needs urgent referral so why are all these doctors not pushing it urgently?! Strange to me.

I see you've mentioned irritable hip already,
It is possible it's that but I think you need to be reassured better by the doctors before trusting this
At 2yo my son suddenly developed irritable hip and couldn't bear any weight on his right leg. He had been fine, woke up from a nap one evening and just dropped to the floor. I absolutely shat myself and never in a million years imagined that could happen after what they told me was caused by a viral infection...
he is non verbal as well so made things more difficult.
I called out of hours and went to a&e the next day with videos. He had an X-ray which showed nothing concerning and they told me all about irritable hip and emailed me leaflets to read up on.
I had a week of him completely not being able to walk/stand, being carried by me everywhere. Then a few more days of cruising the furniture for support and on/off limping. By the time we went back to the hosp for a follow up 2 weeks later it had resolved and he was totally normal

But difference being I felt very supported by the hospital paediatrician and was given lots of reassurance so I didn't feel shrugged off at all and trusted what they were saying but sounds like you need someone at the hospital to be firmer in their diagnosis to give you peace of mind. I would go back to a&e, with the videos and don't leave if you don't feel listened to.

This is what the pediatrician suggested the first time I went to a&e, he said its something that can happen and is the most likely cause and that it goes on its own and is harmless, I was reassured by that as it had only been a week at that point and he said to wait another week and if it hadn't resolved then take him back, I obviously took him back but was taken to minor injuries instead of peadiatrics and then sent back to the gp who has referred to specialists but is being treated as routine so I could be waiting months to hear from them, this has been going on for over a month already, he's had a blood test, he hasn't been offered an xray or scan and I think if it was irritable hip the symptoms would be gone by now, I think if I go back to a&e for the 3rd time surely they will offer some kind of scan or xray because we need to see what is going on inside his leg now! Tbf as a previous poster said, when I went back the second time I was sent to the wrong department so the pediatrician I saw the first time is blissfully unaware that he's still having this issue. One gp told me to go to a&e and stress that he needs to be seen urgently by peadiatrics for tests and the last gp I saw yesterday told me to wait for my appointment to come through and bring him back if I've anymore concerns! I feel like I'm just not getting anywhere, a pain and limp for this long surely can't be normal and would need an xray at the very least, I just feel like I'm going in circles and probably the only option to be seen urgently would be to go back to a&e and be firm

I was also wondering this.
My DD around that age would randomly stop using her arm and say it hurt to move it. Turned out she is hyper mobile and her elbow was getting dislocated for some reason. She didn’t find out she was hyper mobile until she dislocated her knee in her teens and the hospital told her. She’s in her 20s now and still dislocates her knee every now and then but can now pop it back in herself 🤮

This would fit with him not using his leg/ bending his knee and only happening sometimes. How bendy are his fingers? Can you move his thumb to his arm for example? Although you would think the doctors would’ve picked it up when bending his leg around.

Whatever it is it needs sorting, so keep pestering them. In my experience those who shout the loudest get seen the soonest! Good luck

I've never been told he's hypermobile, I think his older brother may be as he can bend his elbows really weirdly and make them look like they are bending inside out haha! But no I've never noticed him being overly bendy he was sofa surfing at 9 months and walking by 10 months so never noticed any issues with his legs, and when the doctors have examined him and moved his legs about they haven't mentioned this either.. I think there is something going on, but clearly my mind is taking me to the worst case scenario and it probably isn't that, I just want to know what's going on and be able to relax knowing that an xray/scan has ruled things out.. I will definitely keep pushing and hopefully get some answers soon!

I have to say, working in Paediatrics I have come across some GPs who aren't very good at all at Paediatrics. Their training is very variable and some have never worked in a Paediatric dept so they're relying on their training as a medstudent which might be a 3 month placement. Plus their training in gp which is variable for paeds.

Some gps are great at paeds (my husband is one!) but it's really hard to know!

What I'm trying to say is trust your instinct and take him back to paeds a and e and be firm. If it helps you, take his dad /a male relative /male friend /assertive friend of any sex to help you get answers.

Hopefully it will turn out not to be anything serious but the symptoms need proper review as they've not settled.
He's your third DC and you said yourself you don't normally seek medical care when they're just a little bit ill. So you know in your heart of hearts you need to get this seen properly by a Paediatric registrar or consultant.

They won't dismiss you if you go back (well they really really shouldn't) because of their system of flagging when it's a third presentation for the same condition.

Good luck let us know how you get on...

Thank you for this, this is what I keep saying to my partner that some gps just wouldn't see it as a red flag because they don't train fully in children's conditions, the first gp I saw recognised this as a 'red flag' symptom and urged me twice to take him to be seen as soon as possible by a pediatrician to rule out the more serious causes.. thank you for the advice! I really think the quickest way to get this sorted is to flag it a 3rd time at a&e and hopefully they will see he's been there over a period of time with the same symptoms and no improvement and start to do something to rule things out! I will update the post when I finally get somewhere with them x