Page 13 | Something not right with 3yr old

BethMck · 2025-01-22T22:48:17+00:00

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

Original poster

BethMck · 23/01/2025 17:16

SailingYachty · 23/01/2025 16:55

I’m so sorry OP, I agree with you to keep insisting on a scan. My cancer wasn’t picked up with a blood test, I had a lump and scans and biopsies confirmed it. You really need to rule out bone cancer or leukaemia. Unfortunately you can have cancer without feeling/looking ill until it’s too late.

So sorry you are going through that, i really hope you are doing well! This is my point, the doctors told my 21 year old cousin she looked healthy and if it was anything serious she would be very sick, months of begging for tests they agreed to a scan that found a mass and biopsy to confirm, she died a year into treatment at just 22! My other cousins little boy was also very healthy and only had a strange bruise that wouldn't go, they put off tests for months with him because he looked fine but it was a scan and biopsy that confirmed, he was only 4 but is thankfully in maintenance now bless him! The peads told me the first time in a&e if he had leukemia he would look very sick and have high temperature and swollen lymph nodes, I think those symptoms come later down the line! I would just like a scan to reassure me there's nothing going on with his bones or joints, I do hope it is the low vitamin D but as they haven't expressed that his levels are extremely low I'm not fully convinced

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Original poster

BethMck · 23/01/2025 17:08

BlueberryPieface · 23/01/2025 16:47

Can you phone up the GP receptionist and ask them what the Vit D levels were? I’m sure they’d tell you or email them over. But the fact they didn’t actually prescribe him anything makes me think they weren’t that outrageous.

This is exactly what I thought, if they were extremely low I think they would have phoned me and explained and prescribed something, when my iron level was low the doctor phoned me and said it is slightly low just take some iron supplement from the pharmacy, where as some people are told its extremely low we will prescribe this to take X amount of times for X amount of weeks/months! They also never mentioned having a follow up to make sure the symptoms had gone after taking the vitamins etc so I can't imagine his levels are that low but I will call and ask for a copy

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SailingYachty · 23/01/2025 16:55

I’m so sorry OP, I agree with you to keep insisting on a scan. My cancer wasn’t picked up with a blood test, I had a lump and scans and biopsies confirmed it. You really need to rule out bone cancer or leukaemia. Unfortunately you can have cancer without feeling/looking ill until it’s too late.

BlueberryPieface · 23/01/2025 16:47

Can you phone up the GP receptionist and ask them what the Vit D levels were? I’m sure they’d tell you or email them over. But the fact they didn’t actually prescribe him anything makes me think they weren’t that outrageous.

Original poster

BethMck · 23/01/2025 16:43

Oldie73 · 23/01/2025 16:37

I think it’s unusual for a 3 year old to repeatedly complain about a pain that is imaginary. My friend’s son had something called Perthes Disease - it affects the hip joint, although pain can be referred to the groin or knee. Boys get it more than girls. It’s perfectly treat able.
Also IBD can give joint pain (and diarrhoea) but if there’s no inflammation showing on the blood test it’s unlikely and he’d be very young to have symptoms of that.

See the fact there is no sign of inflammation/infection markers would appear that arthritis or joint infection is ruled out.. he hasn't had an accident so that would rule out fractures etc, the vitamin D is a likely cause but I think that depends how low it is.. people saying blood test has ruled out cancer just isn't true, a lot of cancers are only found during Xray/scan etc.. if they would do that and rule it out then focus on explaining what I need to do to maintain his vitamin D this would really put me at ease

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TheParrot · 23/01/2025 16:38

POTC · 22/01/2025 23:12

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!

I was thinking this too. Did he have a nasty stomach upset a few weeks before the 17th? I got salmonella once from a chicken sandwich on a plane (proven, compensated) and a month later I was riddled with reactive arthritis. For 6 months of my early 20s I was like a ninety year old. I had to go down stairs slowly on my bum and couldn’t bear down to use a knife or fork. The joints in my toes and fingers were excruciating. Then after thinking ‘this is just my life now’ for half a year It vanished over the course of a week without warning. I’m 50 now and it’s never come back. I have had a taste of old age which I’d rather not have had.

Oldie73 · 23/01/2025 16:37

I think it’s unusual for a 3 year old to repeatedly complain about a pain that is imaginary. My friend’s son had something called Perthes Disease - it affects the hip joint, although pain can be referred to the groin or knee. Boys get it more than girls. It’s perfectly treat able.
Also IBD can give joint pain (and diarrhoea) but if there’s no inflammation showing on the blood test it’s unlikely and he’d be very young to have symptoms of that.

Original poster

BethMck · 23/01/2025 16:36

ChicLilacSeal · 23/01/2025 16:31

I cannot believe you are having so much trouble getting him properly looked at. In contrast, my late dad had quick and amazing treatment when he was seriously ill. I'm grateful for the NHS, but the care is as patchy as a Friesian cow.

Do you remember the name of the first paediatrician who saw your son and was concerned? At this point, I'd message them on FB or LinkedIn and ask to see them again. (Since you never know who will be on duty in A&E.)

Edited

Honestly I wouldn't be so worried if my cousin hadn't been told she's fine and refused tests, same with another cousins little boy it was 4 months before they agreed to do tests and it turned out to be the worst. The blood tests indicate all is fine, but the symptoms are still there, so they need to investigate further with a scan or discuss the vitamin D with me.. they keep saying vitamin D can cause a few aches and pains so this could be a cause but they haven't told me how low his levels are and that yes 1000% that is what's causing my sons pains. It's so frustrating! X

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ChicLilacSeal · 23/01/2025 16:31

I cannot believe you are having so much trouble getting him properly looked at. In contrast, my late dad had quick and amazing treatment when he was seriously ill. I'm grateful for the NHS, but the care is as patchy as a Friesian cow.

Do you remember the name of the first paediatrician who saw your son and was concerned? At this point, I'd message them on FB or LinkedIn and ask to see them again. (Since you never know who will be on duty in A&E.)

Original poster

BethMck · 23/01/2025 16:25

mindutopia · 23/01/2025 16:12

Have they done X-rays? And how low was his vitamin D as per the normal range?

When I was vitamin D deficient, they thought I had rheumatoid arthritis. Knee pain, hand pain, so winded just walking up stairs, I had to lie down a lot, I could have slept all day. I was convinced I had cancer. I now actually have cancer and it’s probably the only other time I’ve felt so ill. I really would tackle the vitamin D as I bet that’s a significant cause.

I would want guidance from someone specifically on the paediatric dosing for a deficiency in children. It’s not as simple as just taking the vitamins from Boots. There is a dosing schedule you have to follow to deal with a deficiency. I felt normal again in about 3-4 weeks after I started.

So sorry to hear you have cancer! I hope you are doing as well as can be expected. Thank you for that, that's really helpful from someone who has experienced the vitamin D deficiency, nobody has told me what his levels were, they literally just sent me a text saying his vitamin D level is low and to go to the pharmacy and get 1000iu supplement.. I need to find out more about that because if it is severely low then that is the likely cause, if it is just slightly low then I don't think I'll be reassured that is the reason.. he hasn't been Xrayed he's had a blood test which is normal for everything they tested, but this is how my cousin was left undiagnosed for so long, she was told if it was cancer her blood test would be off, they didn't want to scan her because "you're too young for it to be bowel cancer" it's probably IBS.. she died shortly after starting treatment too late, so this is why I'm concerned that they don't want to rule that out especially considering a persistent pain and limp in a child is one of the earliest signs of many childhood cancers.. although it is a symptom of 100s of other illnesses and ailments too so it's just frustrating not having a definitive answer and being left with the feeling of what if

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mindutopia · 23/01/2025 16:12

Have they done X-rays? And how low was his vitamin D as per the normal range?

When I was vitamin D deficient, they thought I had rheumatoid arthritis. Knee pain, hand pain, so winded just walking up stairs, I had to lie down a lot, I could have slept all day. I was convinced I had cancer. I now actually have cancer and it’s probably the only other time I’ve felt so ill. I really would tackle the vitamin D as I bet that’s a significant cause.

I would want guidance from someone specifically on the paediatric dosing for a deficiency in children. It’s not as simple as just taking the vitamins from Boots. There is a dosing schedule you have to follow to deal with a deficiency. I felt normal again in about 3-4 weeks after I started.

Original poster

BethMck · 23/01/2025 16:09

ChicLilacSeal · 23/01/2025 16:06

OP, have you mentioned to the docs the multiple young cancers in your family? If not, definitely do so.

I have mentioned I have a number of cousins that have had cancer, not in great detail but I definitely am going to mention this properly next time I see them

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Original poster

BethMck · 23/01/2025 16:08

Inkyblue123 · 23/01/2025 15:34

Trust your instincts, something is not right - it doesn’t have to be cancer to be a valid concern! Go online and see if there is an NHS health centre near you that specialises in children’s services, check for Children’s Occupantional services, school nursing service, children’s search and language therapy - each local authority usually has one centre where children’s services are located and then call them directly and ask for an appointment. Is your child at nursery? Or are you in contact with a health visitor? My GP and local hospital were shite.

He is at nursery, I just feel all out of options at this point, trying to contact a health visitor in my area is near impossible I haven't been in contact with them since my son was a baby! As a previous poster said most gp's don't fully understand childhood symptoms to be aware of. The peads at a&e did want to see him again but when I took him back I was sent to minor injuries instead of peads, so I think going back to the same peads in a&e and them seeing it is still going on they will want to run tests

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ChicLilacSeal · 23/01/2025 16:06

OP, have you mentioned to the docs the multiple young cancers in your family? If not, definitely do so.

Original poster

BethMck · 23/01/2025 16:05

JoyousGreyOrca · 23/01/2025 15:25

A and E are not a fast track diagnosis to cancer. You have had various blood tests that would have ruled out cancer.

My GP has told me to take him there as my hospital has peasiatric doctors in the a&e department. Not all cancers are ruled out by a blood test which is why the GP said he needed urgent tests such as xray or scan. If I wait months to see a specialist and it turned out to be something that serious I would feel so guilty, when a scan could detect certain things that a blood test can't.

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Inkyblue123 · 23/01/2025 15:34

Trust your instincts, something is not right - it doesn’t have to be cancer to be a valid concern! Go online and see if there is an NHS health centre near you that specialises in children’s services, check for Children’s Occupantional services, school nursing service, children’s search and language therapy - each local authority usually has one centre where children’s services are located and then call them directly and ask for an appointment. Is your child at nursery? Or are you in contact with a health visitor? My GP and local hospital were shite.

JoyousGreyOrca · 23/01/2025 15:25

A and E are not a fast track diagnosis to cancer. You have had various blood tests that would have ruled out cancer.

Original poster

BethMck · 23/01/2025 13:49

BeLilacSloth · 23/01/2025 13:22

Tbh what you might want to do is go to A&E and tell them you believe your son might have cancer and i’m not leaving until he’s screened for it. Do not leave the hospital until they have tested him (MRI etc..) they can’t shame you for protecting your son. Stand your ground OP.

This is what I'm swaying towards, it's not asif I'm just barging in demanding something for no reason, the peads told me to go back and the gp is urging me to take him and ask for tests and it is a persistent unknown symptom that needs to be ruled out.

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BeLilacSloth · 23/01/2025 13:22

Tbh what you might want to do is go to A&E and tell them you believe your son might have cancer and i’m not leaving until he’s screened for it. Do not leave the hospital until they have tested him (MRI etc..) they can’t shame you for protecting your son. Stand your ground OP.

Original poster

BethMck · 23/01/2025 12:54

jellyjester · 23/01/2025 12:44

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

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jellyjester · 23/01/2025 12:44

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...

Original poster

BethMck · 23/01/2025 12:37

BlueberryPieface · 23/01/2025 12:28

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

Edited

Show quote history

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!

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BlueberryPieface · 23/01/2025 12:28

Franjipanl8r · 23/01/2025 00:23

Is he hypermobile? Has that been discussed and ruled out?

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

Original poster

BethMck · 23/01/2025 12:04

thistlepiedpiper · 23/01/2025 11:28

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

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thistlepiedpiper · 23/01/2025 11:28

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.