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

Id want that tested too. His leg shouldn’t be hurting like that. My dr always said to come in if they limp and have illness x

Push for tests

other symptoms diarrhoea, looking off colour and saying he's tired and needs to lie down on the sofa to rest

You know as your instinct tells you that this isn’t right for a 3 year old…I just hope you are wrong.

It must be very worrying, and it's not normal for a 3 year old to have pain when they weightbear. But he has had blood tests, and he has been referred to a paediatrician, so they are not dismissing this.

He’s had blood tests and you should be very reassured by that OP.

This is not the same as people who can’t get the doctor to do blood tests (like your cousin).

I’m so sorry about your cousin, that is terrible.

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..

It wasn't a blood test they refused my cousin, she had that and was practically given the all clear as blood test was normal, it was scans they didn't want to do, they said she probably had IBS but she actually had bowel cancer! Bless her heart, she left behind a 2 year old son, heartbreaking!

Just to reassure you, low vitamin d can cause bone pain, fatigue amongst other things.

Can you go to the GP daily - or threaten to go to him every day

Tell him that something isn't right and he wouldn't bloody want the negligence case you'll bring if its something serious

Can you take a man with you as well, doctors respect them more 😤

Sorry op, don't ignore your instincts x

It could be Reactive Arthritis
My son had that, it was just like you are describing. Pediatrician diagnosed it and said it would go away and likely never come back. He was right, 5 years later it hasn't!

This I have read also, but for some reason I don't feel reassured by it, I think because my older son was low in vitamin D and had no symptoms other than being very pale, I know things affect people differently but just the length of time it's been going on and how it's only recently moved to his other leg etc, maybe I am just being paranoid though and letting my thoughts run away with me! Just so worrying when you don't know for sure x

Tbh if I was really worried I’d book an appt with a second GP or private GP if needed to get peace of mind while you wait. I’d want a second opinion.

Thank you for this! I feel like hearing people have had the same experience and it turned out to be nothing serious helps to ease the anxiety, do you remember how long you waited to see pediatrics? Although it has been 5 years so waiting times have probably changed since, the waiting is killing me off. I just need to know for definite my baby is ok 😔

Op keep pushing, and get family your partner on side in the appointments with you and 2nd opinion's.

My friend went to the GP when her DD was 2 and 3 and 4 and 5 saying something wasn't right, repeated pain, constant fatigue, non stop UTIs, infections, colds etc all brushed off, for years!!

Mum even got referred and put on anti depressants, labled as a depressed mum. (Disgusting)

Turned out at 6 her DD has a rare genetic kidney disorder, everything she's been eating and drinking has caused stones as she doesn't have the enzymes to break down so it created stones, she's had multiple surgeries, it's a potential life limiting condition with not much research.

But she bloody knew something wasn't right from about 2 years old.

It took ages to discover and it's not cancer, but you really need to trust your gut here and get fobbed off.

Fingers crossed it's something simple and maybe growth pains or similar, but I'm with you and would be the best advocate for my kids, even if I did get told I was bonkers

The thing is, he has seen a different doctor 3 times and been to a&e twice, there was only one doctor that seemed to be worried and told me to go to a&e for urgent tests if it persisted but a&e don't take you seriously when your child is sat playing happily in the waiting room and looks perfectly well, they just told me to go back to my gp if it persisted..

If I was in your shoes I would pay for a private scan, could not settle until I had it done tbh.

Sorry to hear you are worried and your son isn't right. A few things... how low is his vitamin d? It can cause pains/aches in limbs and muscles if severe. Has he been given any supplment and is there any follow up to check that his levels are where they should be after a month or six weeks?
Also, have you told your GP about your cousin? It helps to be really clear with your GP about any concerns you have and detail family history too.
For what it's worth, I'm getting in touch with GP tomorrow about similar concerns with my child.

Do you have a hospital nearby with a paediatrics A&E? We ended up at one having been sent from an Urgent Treatment Centre at a smaller hospital. Maybe pack a bag one day, prepare for a wait and go there?

Oh my gosh that's terrible!! I really hope she is doing ok, and her poor mother who was made to feel stupid, absolutely crazy!! This is why I can't settle when doctors say "it's probably this or likely that" they don't know for sure until they run tests and I don't feel comfortable being told it might be something when there's a chance it could be something more serious! I'm just hoping when the pediatricians contact me they will be willing to do appropriate tests to rule the worst things out asap and I can get the reassurance, I will feel really daft if it turns out to be his low vitamin D as I know that can cause similar symptoms and could well be the cause, but the relief would be immense and I just want to be feeling that instead of not knowing when he'll even be seen and wondering what if it is more serious than they think!

OP, you are not wrong to be worried.
I had similar 20 years ago when my son started limping then dragging his leg.
We brought him to A&E having rung the doctor who agreed to go in and she gave me a letter which we picked up.
He was thoroughly scanned and checked.
It was viral, unusual but viral and it went away.

In your case I would email the surgery and register your concern, list out all the symptoms and request they upgrade it.

Sometimes an email, creating a paper trail can focus minds...repeating all the different symptoms that you have previously brought to his attention in your in person consultation with them.

Hoping it is nothing serious.

Funnily enough they never told me how low it was I just got a text to say all blood tests were normal apart from vitamin D and to go to the pharmacy and get some supplements, I thought if it was very low they would have called me and prescribed something and arranged a follow up appointment/bloods to check pain had stopped and levels were back to normal, as they didn't do that I pressumed they would just be slightly lower than normal and that's why I'm not convinced that's the cause of his pains. Good luck tomorrow I really hope your LO is ok and gets seen to quickly x

Our local hospital does have pediatric a&e, the first time I took him they told me it is likely to be irritable hip and if it hadn't settled down in a week to go back and they'd do test, a week later I went back and they sent me to minor injuries instead who told me it's probably growing pains and told me to go back to gp if it persisted, gp then sent him for blood test and that showed low vitamin D but nothing else was mentioned, I've been told its probably irritable hip, probably growing pains, could be juvenile arthritis but not actually had a definite answer and the pain has moved to his other leg but still worse in the right leg, just so stressed with the fact it's well over a month since the onset of symptoms!

I totally hear how scared you are.

In a completely non-goady way, I promise, what is it you would like the doctors to do asap. Ie what tests other than the blood tests you had do you feel would reassure you this is not leukaemia (a blood cancer).

from the outside it sounds like you’ve absolutely been listened to. Bloods done to rule out urgent cause for concern and paediatrics referral to get to the bottom of what’s going on.

think it would make sense though if you have a specific concern or are hoping for a specific investigation to go back to the gp to discuss this even if it means them just explaining their reasoning for not being concerned/doing this asap.

you can also always ring the paeds secretaries and ask if you can be called last minute if there is a cancellation as you are very concerned and would like him to be seen as quickly as you possibly can.

Ask for repeat bloods so you can see if his vit d levels have improved

This is what I don't understand, they keep saying it could be this and could be that but they don't actually know for sure.. I really want them to xray/scan him and I understand they have referred him which is all the gp can do but he is down for a routine appointment which could be weeks away, 2 weeks since he was referred and still not heard from them, I really can't stand the waiting, hearing him say mummy I need to see the doctor soon my leg hurts, on a daily basis is so sad bless him!

Call the secretaries and find out the date for your appt. But routine appt may be many weeks/some months just to prepare you. But as above saying you’ll come last minute if any cancellations and how worried you are.