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

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.

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

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.

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.

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

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

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

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

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.)

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

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.

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.

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

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.

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.

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

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

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.)

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.

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

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.

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!

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