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AIBU?

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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 · 26/01/2025 20:29

ChicLilacSeal · 26/01/2025 20:13

The fact that they sent you to minor injuries which then resulted in this delay must be SO frustrating.

Very frustrating, just peads get him an appointment quickly now that it's down as urgent

OP posts:
Painauraison · 26/01/2025 20:26

I'd want this looking into asap, obviously there are many things this could be but these are quite concerning symptoms in children.

If they really aren't listening and if things get any worse, I'd consider presenting at a & e because they will likely look into this sooner.

This has happened to me with months of going to gp and waiting for referrals and got a bit worse one day, presented at a & e and all tests were done, I was admitted and treatment commenced....(not cancer). I know they say stay away a & e but I'd feel like i had no choice because no one is listening.

ChicLilacSeal · 26/01/2025 20:13

The fact that they sent you to minor injuries which then resulted in this delay must be SO frustrating.

Original poster
BethMck · 26/01/2025 20:11

ChicLilacSeal · 26/01/2025 20:03

I'm glad that the referral to peds is now upgraded to urgent. Thank goodness for small mercies.

Me too, I feel better now, BUT when I took him to a&e the 2nd time this would have happened then but because they sent me to minor injuries it was missed! The doctor I spoke to today called the peads clinic and they were the ones that agreed for it to be changed to urgent so I feel like I'm being taken seriously now, we went off track a bit but now we're on the right path so fingers crossed all will be sorted soon

OP posts:
Original poster
BethMck · 26/01/2025 20:08

BlueberryPieface · 26/01/2025 19:42

For Gods’s sake, so the Vit D was a red herring?!!! They prob said that to shut you up.

Hope he gets a scan soon, keep chasing it up and pushing. Keep us updated 💐

Show quote history

This is what I'm thinking, I said to my partner something doesn't sit right with me about that vitaminD and I think we need to keep pushing it, he thought I was nuts but it appears I was right! I'm really hoping things go a bit quicker now and we get some answers soon!

OP posts:
ChicLilacSeal · 26/01/2025 20:03

I'm glad that the referral to peds is now upgraded to urgent. Thank goodness for small mercies.

BlueberryPieface · 26/01/2025 19:42

BethMck · 26/01/2025 19:34

Just wanted to update this post and thank you all for the advice, we decided to take our son back to peadiatrics in a&e, I thought they would at least offer an xray but she said they won't do that as he was mobile so there was no obvious sign of a fracture or similar and after examination there was no obvious sign of any boney growths so an xray wouldn't reveal much, as its been going on over 5 weeks she has recommended an urgent referral to peads where he will likely have a CT or MRI scan but he'll obviously need to be put to sleep for this so will need to be arranged properly at the peads clinic, so we have no answers as of yet but hopefully will get them sooner now! Also she told us after looking through his notes and seeing his blood test results that his Vitamin D levels were normal!! How strange..

For Gods’s sake, so the Vit D was a red herring?!!! They prob said that to shut you up.

Hope he gets a scan soon, keep chasing it up and pushing. Keep us updated 💐

Original poster
BethMck · 26/01/2025 19:34

Just wanted to update this post and thank you all for the advice, we decided to take our son back to peadiatrics in a&e, I thought they would at least offer an xray but she said they won't do that as he was mobile so there was no obvious sign of a fracture or similar and after examination there was no obvious sign of any boney growths so an xray wouldn't reveal much, as its been going on over 5 weeks she has recommended an urgent referral to peads where he will likely have a CT or MRI scan but he'll obviously need to be put to sleep for this so will need to be arranged properly at the peads clinic, so we have no answers as of yet but hopefully will get them sooner now! Also she told us after looking through his notes and seeing his blood test results that his Vitamin D levels were normal!! How strange..

OP posts:
Mabelface · 24/01/2025 17:46

BethMck · 22/01/2025 23:14

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

Show quote history

Just coming back to this 😊. I was pretty poorly with low vitamin d. Joint pain, fatigue, depression, anxiety and a real feeling of just being generally unwell. It took 3 months for me to recover.

Original poster
BethMck · 23/01/2025 22:51

DollydaydreamTheThird · 23/01/2025 22:22

NHS waiting times
Sorry if someone has already posted this OP. I'll admit I've not read all the replies.
This link gives you a rough idea how long you will wait for an appointment at your local hospital. You can always ring the hospital and ask to speak to the waiting list coordinator for paeds who might be able to give you a more accurate time. Hoping all is well for your LO. 🙏

Thank you, I am going to try and find out his vitaminD levels and if they are only slightly low I'm going to try get him seen as quick as possible, I'm convinced it's something to do with the bone or joint but obviously nobody would know that without a scan! Fingers crossed they agree with me

OP posts:
DollydaydreamTheThird · 23/01/2025 22:22

NHS waiting times
Sorry if someone has already posted this OP. I'll admit I've not read all the replies.
This link gives you a rough idea how long you will wait for an appointment at your local hospital. You can always ring the hospital and ask to speak to the waiting list coordinator for paeds who might be able to give you a more accurate time. Hoping all is well for your LO. 🙏

My Planned Care NHS

Helpful information and guidance for patients waiting for a hospital consultation, treatment or surgery at in England.

https://www.myplannedcare.nhs.uk/

Original poster
BethMck · 23/01/2025 21:55

MumonabikeE5 · 23/01/2025 21:50

That makes me think you are right to pursue doctors, but also have absolutely no medical basis to do that. I’m just a mum that would think if it wasn’t something they would get distracted, or if it were a habit then they’d only do it at home etc

My partner used to say I think he's just putting it on now possibly because I had made a fuss the first few times but I said just watch him when he does it, he started watching him like I did and he would just shout ouch and grab his leg and hold it up and drop whatever he was doing. I told him a 3 year old wouldn't put his cars down to say he was in pain if he wasn't when he wasn't aware anyone was watching him.. it's frustrating because he can walk perfectly, run and jump and have his legs bent and stretched when the doctors examine him and shows no sign of pain but it will happen randomly throughout the day and then he'll be off running around again! I would have thought low vitD would cause maybe a constant ache but this seems like a sudden sharp pain that comes and goes

OP posts:
MumonabikeE5 · 23/01/2025 21:50

That makes me think you are right to pursue doctors, but also have absolutely no medical basis to do that. I’m just a mum that would think if it wasn’t something they would get distracted, or if it were a habit then they’d only do it at home etc

Original poster
BethMck · 23/01/2025 21:42

MumonabikeE5 · 23/01/2025 21:38

I would be worried too. Whether I’d be justified is another matter.
but I would insist on tests. Whatever they may be.

does he express pain and limps etc when at nursery or just around you?

Nursery have said they have seen him limping slightly now and again, he does it so randomly, he can be sat in the bath, the car, on the floor with his toys and he will cry out and grab his knee, or he could be running around and suddenly stop and say he can't walk, or it will just present as a subtle limp where you can see he's trying to keep his right leg straight!

OP posts:
Original poster
BethMck · 23/01/2025 21:38

Paisleyandpolkadots · 23/01/2025 21:34

My son and I both take vitamin D. He's an adult though. He got tested and it was very low. Mine was just lowish. We live in a country with very high UV levels and are very light skinned so we use a lot of sunblock, wide brimmed hats etc. We take a once a month prescribed tablet. I don't know whether it is suitable for children though.

I need to chase this up and see what my sons levels are actually showing, where we live we barely get any sun so most people in the UK are advised to take vitamin D supplements especially during winter months, do you recall if either of you had symptoms similar to my son? The pain and limping in one leg has been going on for over a month but the left leg and right arm has started recently..

OP posts:
MumonabikeE5 · 23/01/2025 21:38

I would be worried too. Whether I’d be justified is another matter.
but I would insist on tests. Whatever they may be.

does he express pain and limps etc when at nursery or just around you?

Paisleyandpolkadots · 23/01/2025 21:34

My son and I both take vitamin D. He's an adult though. He got tested and it was very low. Mine was just lowish. We live in a country with very high UV levels and are very light skinned so we use a lot of sunblock, wide brimmed hats etc. We take a once a month prescribed tablet. I don't know whether it is suitable for children though.

Original poster
BethMck · 23/01/2025 21:30

SailingYachty · 23/01/2025 21:14

Thank you, yes after 4 months of chemo I’m in remission!
Apart from one enlarged lymph node I had no other symptoms, no tiredness, no night sweats, no illness, no loss of weight. As you say they’d come eventually but I still had stage 4 Hodgkin’s lymphoma without those symptoms so I’m very glad the gp took me seriously! I want them to take you seriously too, just in case. Obviously I hope it’s just the vit D levels but I still urge you to push for a scan to make sure it’s nothing else.

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So glad to hear you are in remission!! Amazing!! It's such a scary thing because most cases I've heard the symptoms have been very subtle and easy to dismiss! When my brother was diagnosed he had a pea sized lump that he said had been there for 2 years and he just ignored it because it didn't cause him any problems and hadn't been painful or growing and had no other symptoms!! He was lucky that it hadn't been cancerous for that whole time but only recently become cancerous! I definitely am going to keep pushing to be heard because I'd rather him be checked properly and it turn out to be nothing than wait it out and find out it serious later down the line! I think a scan can rule out a number of possible causes too so fingers crossed we can get something sorted.

OP posts:
SailingYachty · 23/01/2025 21:14

BethMck · 23/01/2025 17:16

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

Show quote history

Thank you, yes after 4 months of chemo I’m in remission!
Apart from one enlarged lymph node I had no other symptoms, no tiredness, no night sweats, no illness, no loss of weight. As you say they’d come eventually but I still had stage 4 Hodgkin’s lymphoma without those symptoms so I’m very glad the gp took me seriously! I want them to take you seriously too, just in case. Obviously I hope it’s just the vit D levels but I still urge you to push for a scan to make sure it’s nothing else.

Original poster
BethMck · 23/01/2025 19:20

Amba1998 · 23/01/2025 18:32

was the white blood cell count normal? Usually when children with cancer complain of leg pain or other symptoms that is usually way off in the blood test. I would be reassured if the bloods were normal. But you still want things being investigated properly quite rightly

All other tests regarding his blood was fine but my friend was telling me about her relative who had absolutely normal blood tests and still had leukemia which was diagnosed after numerous other testing, I know that is probably very rare and I'm not overly convinced it is that but the fact there is that chance makes me worry a little, I think if they did a scan to check his bones/joints are ok then this would make me feel much better, some days, like today, he will look very pale and have dark circles under his eyes, then other days he looks completely fine so it's the up and down pain and the up and down looking/feeling unwell that has me questioning.. I'd have thought if it was caused by the vitD then surely he would be pale, in pain and tired/unwell all of the time and not on and off like he is, I don't know I just wish I had some answers

OP posts:
Original poster
BethMck · 23/01/2025 19:14

borborygmus1 · 23/01/2025 18:24

Even juvenile idiopathic arthritis would warrant an urgent referral due to the risk of joint damage if left untreated. GP should request x-rays of the affected joints themselves and expedite the paediatric appointment to urgent.

I'm correcting myself from my earlier post - it's an abdo x-ray that is 75 days background radiation, CT is higher exposure. MRI scans involve no exposure to radiation at all. MRI is the usual imaging modality for limbs if more detailed investigation is required, although obviously your GP will not have access to CT/MRI scans for a 3 year old!

Patients should trust their instincts - if you think something is wrong, be willing to push hard for investigation.

This is why I can't understand why they haven't pushed for an xray at the very least, the gp did say he needs urgent test which is why he told me to go to a&e peads as that's the quickest way to get the tests he would need. I'm definitely going to keep at them but I will start with investigating his low vitD levels and getting the correct dosage information and see how we go from there, if they are very low then that may well be the cause!

OP posts:
Original poster
BethMck · 23/01/2025 19:11

LarkinAboot · 23/01/2025 18:15

Vitamin D deficiency can cause lots of pain - awful aches - really debilitating.
Low mood, fatigue, weak immune system- honestly don't underestimate it how terrifying it can present but actually how easily remedied it is.

Make sure you're supplementing - ask your GP for a safe loading dose to boost it initially (and try if you are at all able get away for mini break of winter sun.)

I just found it odd how the doctor didn't want to speak to me to let me know if his levels were really low I'd have thought they'd call me to reassure me that yes this is the likely cause of the pain because his levels are pretty low, dyswim? And then advise the correct dosage and a follow up to check things were back to normal.. the fact they didn't do this makes me think they aren't overly low and it's just a coincidence they are low as let's face it I'm sure everyone in the UK has low vitamin D but I am going to call tomorrow to investigate this further and try and get some better advice with the dosage.

OP posts:
Amba1998 · 23/01/2025 18:32

was the white blood cell count normal? Usually when children with cancer complain of leg pain or other symptoms that is usually way off in the blood test. I would be reassured if the bloods were normal. But you still want things being investigated properly quite rightly

borborygmus1 · 23/01/2025 18:24

Even juvenile idiopathic arthritis would warrant an urgent referral due to the risk of joint damage if left untreated. GP should request x-rays of the affected joints themselves and expedite the paediatric appointment to urgent.

I'm correcting myself from my earlier post - it's an abdo x-ray that is 75 days background radiation, CT is higher exposure. MRI scans involve no exposure to radiation at all. MRI is the usual imaging modality for limbs if more detailed investigation is required, although obviously your GP will not have access to CT/MRI scans for a 3 year old!

Patients should trust their instincts - if you think something is wrong, be willing to push hard for investigation.

LarkinAboot · 23/01/2025 18:15

Vitamin D deficiency can cause lots of pain - awful aches - really debilitating.
Low mood, fatigue, weak immune system- honestly don't underestimate it how terrifying it can present but actually how easily remedied it is.

Make sure you're supplementing - ask your GP for a safe loading dose to boost it initially (and try if you are at all able get away for mini break of winter sun.)