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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Something not right with 3yr old

419 replies

BethMck · 22/01/2025 22:48

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

OP posts:
Original poster
BethMck · 23/01/2025 09:50

jellyjester · 23/01/2025 09:26

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.

OP posts:
jellyjester · 23/01/2025 09:26

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.

User757373 · 23/01/2025 09:14

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.

Original poster
BethMck · 23/01/2025 08:57

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.

OP posts:
BeLilacSloth · 23/01/2025 04:00

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.

Tigergirl80 · 23/01/2025 03:16

BethMck · 22/01/2025 22:58

I totally understand your point, but I asked the gp to refer him urgently and he said he would ask permission from pediatrics to see if they agreed it was urgent, pediatrics have put it through as routine so they don't seem to think the pain and limp is serious, even though this seems to be an early symptom of things such as Leukemia. I thought they would have wanted to rule it out much quicker..

Show quote history

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.

RedHelenB · 23/01/2025 02:45

Lexie365 · 23/01/2025 01:39

Tbh if you turn up in a&e and tell them your child hasn't been able to bear weight on his leg for over a month shouldn't they automatically do an x-ray?

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

madeinthe80z · 23/01/2025 02:31

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 😊

ChicLilacSeal · 23/01/2025 02:29

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.

ChicLilacSeal · 23/01/2025 02:25

BethMck · 23/01/2025 00:56

I have mentioned Sarcoma to the first gp I saw, and he agreed he should be checked and needs urgent bloods and xray and urged me to go to a&e, pediatrics there told me he looks fine and to go back in a week if things hadn't settled down, I went back the next week and they sent me to minor injuries instead of pediatrics and they told me to go back to my GP, GP sent him for bloods and has been referred for routine appointment at pediatric specialist, that was 2 weeks ago... I've been going round in circles for so long and now it appears to be just a waiting game to be seen by specialists. Part of me thinks that's fine I'll wait the doctors know what they're doing and part of me thinks they can't know for sure without a scan/xray so I should push for that quicker so things can be ruled out. I don't know if I'm just overthinking things or if there's something going on that needs seeing to quicker than they believe it does 😔

Show quote history

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.

ChicLilacSeal · 23/01/2025 02:22

LostittoBostik · 23/01/2025 02:19

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

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.

Paisleyandpolkadots · 23/01/2025 02:21

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.

LostittoBostik · 23/01/2025 02:19

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

ChicLilacSeal · 23/01/2025 02:16

JoyousGreyOrca · 23/01/2025 01:28

@ChicLilacSeal there is no point paying for a private appointment unless you can also afford the tests. And currently OP does not know what tests her child needs.
The child has been referred to a paediatrician. A GP getting a letter from a private GP (it will not be a paediatrician for that cost) saying the child needs certain tests will be ignored. The child is on the right NHS pathway.
The only point going private is if you can pay for a paediatrician and any tests they recommend.

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.

Paisleyandpolkadots · 23/01/2025 01:49

BethMck · 23/01/2025 00:41

The pediatrician we saw when we first went to a&e told us this would be their primary concern, he also said my son looked healthy and didn't have a temperature and wasn't presenting with a limp at that time so there was no need to he concerned about an infection and no need for further tests, he told me if symptoms persistent for another week to go back for tests, I went back a week later and they sent me to minor injuries instead of peadiatrics and they then told me to go to my GP! Feel like I've been going round in circles for this whole time.. what were your childs symptoms of infection? Did he have a high temperature because my son doesn't and the pain and limp comes and goes, has been every day multiple times a day since 17th December!

Show quote history

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.

Lexie365 · 23/01/2025 01:49

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

SeaToSki · 23/01/2025 01:46

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

JoyousGreyOrca · 23/01/2025 01:44

@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

Lexie365 · 23/01/2025 01:42

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 · 23/01/2025 01:39

Tbh if you turn up in a&e and tell them your child hasn't been able to bear weight on his leg for over a month shouldn't they automatically do an x-ray?

mangoes1 · 23/01/2025 01:37

It's also called slap cheek disease. Does your LO have red cheeks or any rash? Anyway worth a mention i thought x

mangoes1 · 23/01/2025 01:35

This is probably wrong but years ago my then SIL rang me all worried as her 2yo was dragging his leg and pale and not eating. I said it's sounds like 5th disease but take him to the hospital. The hospital did a spinal tap. It was 5th disease. A lot of even medics don't have it at the top of their list.
Hope your bub is better soon.

JoyousGreyOrca · 23/01/2025 01:34

Do NOT do what lexle suggests and lie.
Your Drs need an accurate history.

Lexie365 · 23/01/2025 01:33

Some pediatric a&e's are better than others. I would travel a bit further tbh and see if the next one is any better? Maybe (as bad as this sounds so please no hate anyone) lie and say there is a history of cancer in your family? My nephew had leukemia and is thankfully very recently in remission but it was caught early enough thank god🙏🏻 better safe than sorry x

JoyousGreyOrca · 23/01/2025 01:29

@BethMck glad you have a great GP. It really makes a difference