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

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.

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.

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 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?

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..

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!

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

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

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.

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 💐

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

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!

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

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

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.

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

Im so glad it sounds like you are finally being taken seriously, let us know how you get on with the appointment.

This is what we did, we were getting sent here there and everywhere and thought a&e would at least get an xray then seen by peads quickly, the peads referral has been upgraded to urgent which is good because the doctor spike to peads directly and they agree to see him as urgent and not routinely. But no xray, although she gave a very reasonable explanation as to why and basically he needs a scan under GA as an xray is likely to not reveal much if there is no sign of a fracture or bone growth, very strange just wish we could know what's causing it

could it be a bone infection? If so will need treating with antibiotics

I would get a copy of the actual blood results whilst you are waiting and post the result and the range etc here as there are 2 scales for vit D results which could be where the confusion has arisen. Someone will be able to advise you

• 1 ng/mL = 2.496 nmol/L

These symptoms and much worse can be caused by vit D deficiency and they can definitely be intermittent symptoms like yours.

The NICE/NHS protocol for vitamin d deficiency (not insufficiency) is to treat with 6000iu at this age for 3 months and then retest bloods (with prescription/medical supervision, not parents decision to give this high dose). This is 6 x the dose you are giving.

Works like a total instant miracle if vit D is the cause but obviously dont try this unless doctor prescribes it if the bloods justify it!

Good luck

Apologies I’ve not read the whole thread so someone may have mentioned this, but it may be worth getting a blood test for coeliac. It can cause a whole range of symptoms beyond stomach issues, including joint pain, fatigue, and low vitamin D is common due to malabsorption of vitamins. Coeliac UK have useful advice for getting tested. If nothing else it would rule it out

They say they have ruled out bone infection because he hasn't presented with a high temperature, apparently if it was an infection of the bone it would be sore when touched and warm to touch also, according to doctors it would be obvious if that was the cause