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

She is a very wise woman tbf! She had 5 of us so she kinda knows the ropes 😂

My son when he was a little boy was rushed into hospital with a suspected bone infection - he had a sore leg for maybe a week. The orthopaedic surgeons and the paediatricians practically had a pitched battle over him. The orthopaedic people said he had the signs of a bone infection and the scans to prove it. The pediaticians said he looked too well. I would pursue this - a bone infection is really serious if it is not treated early.

Thank you for this, this is what I keep telling myself, I'm grateful he's been referred but with the symptoms he has I really was expecting them to refer him as urgent to rule out those things! With the wait you just had I definitely think it's probably best to push to be seen sooner somehow! I really don't want to go back to a&e with a 'well' child who has no immediate emergency because of how absolutely over run that place is, but my gp did advise to go there as that is the quickest way to get things ruled out! If I can't get a cancellation appointment with pediatrics or get the gp to push for a more urgent referral then this will be the only option if the symptoms to get worse or don't get any better soon!

It maybe nothing but without tests you can't know.
I was at GP often as my child was ill frequently and I had a feeling something was wrong my gut said heart beat was different.

We were seen my different GPs and by pediatrics at the hospital several times. I was basically told it was mum worry and to relax. Our GP and one pediatric doctor told me nothing wrong with heart.
Turned out child had a significant heart defect from birth that had been missed so many times.

Ironically, I still get treated like a worry mum and as a family we get partner (child Dad) to contact GP if my concerns are ignored - he gets a very different reaction. My advise get Dad to say he is concerned about child

The pediatrician we saw when we first went to a&e told us this would be their primary concern, he also said my son looked healthy and didn't have a temperature and wasn't presenting with a limp at that time so there was no need to he concerned about an infection and no need for further tests, he told me if symptoms persistent for another week to go back for tests, I went back a week later and they sent me to minor injuries instead of peadiatrics and they then told me to go to my GP! Feel like I've been going round in circles for this whole time.. what were your childs symptoms of infection? Did he have a high temperature because my son doesn't and the pain and limp comes and goes, has been every day multiple times a day since 17th December!

I've not read all the posts but has your GP considered sarcoma? It doesn't matter that your child can still walk, limping is a red flag for children - especially for a month. That would worry me.

@BethMck I just saw your comment about not knowing the results and just told to buy over the counter vit D. A few things i would suggest:

1. Go into the surgery and ask for a print out of all the blood test results done on your son (legally you are entitled to one printed copy)

2. Either research yourself what optimal should be for a child of his age, or find an online group with experienced people to help you - NOT JUST the vitamin D result.

3. Join a vitamin D group on Facebook. You need the right type of vitamin D (D3), it needs to be taken with the right type of food, you need certain other vitamins as cofactors to support it - and you usually need a much higher dose than over the counter because they are designed to maintain you at a healthy level.

I had vitamin D so low it was below the bottom of the numbers the lab went down to. My doctor put me on some, higher dose than over the counter but not much. I saw another doctor and burst into tears asking why I felt so exhausted all the time, why did everything hurt so much, etc - she looked back at my notes and test results and instantly prescribed a vitamin D supplement nearly 4 times the strength of what dr 1 had prescribed. She said it would have worked, just taken a long time to get there.

Re cancer testing, they won't want to expose your child to unnecessary radiation by giving them scans if they don't think it is needed. I am sure you don't want this either given that in itself has the potential to cause cancer (obviously very unlikely but in such a small child I wouldn't take the risk if I didn't think it was necessary). They also need to suspect a specific cancer to know what tests to do etc. There are certain regular blood tests that would have flagged something was amiss and needed further investigation. I don't know what blood tests your cousin had, or if there are details you weren't privy to, but i am sure your doctor would have ordered absolutely everything necessary so they only had to take blood once and not keep bringing your child back in for more blood tests.

Obviously no one here can guarantee your child has not got cancer. But I do think it is unlikely if the 3 drs, A&E AND the paediatrician you are on the waiting list before all don't think it is anything serious. Apologies if I have the numbers mis-remembered there.

Kindly, step away from Google. dr Google had a nasty habit of making every symptom a sign of cancer. And when you are worrying about that, all it takes is you searching for "child leg pain cancer" or whatever and suddenly you will be bombarded with websites telling you all about cancers it could be.

Keep a symptoms diary between now and your appointment. Note times things seem better or worse. Any activities that make it worse. Etc. If symptoms become worse, go back to the drs - use the symptoms diary as your evidence of how it is getting worse.

Hopefully you won't have to wait too long for the paediatrician appointment. I hope it all turns out to be nothing!

Oh wow!! That is insane! So glad you stood your ground despite doctors attempting to make you feel stupid! I bet that was so frustrating, this is what is concerning me, as mums we know when something is not right but I worry that I'm over thinking it and it's something of nothing and I should just listen to the doctors, but then doctors aren't always right and as you say without the tests there's no way they could give you a definitive answer! Hope your little one is doing ok, I keep thinking maybe if I get dad to take him they might listen but tbh my partner would miss out little details that I would consider relevant and he wouldn't

See you've had some responses concerned about exposure to radiation.

An x-ray leg is the equivalent of 1 day of background radiation
X-ray chest is 3 days of background radiation.

It's when you get to the level of a CT abdomen that the radiation exposure rises to 75 days of background radiation (from memory).

You don't need to worry about radiation exposure from a leg x-ray.

Have a look at this for the NICE guidance for childhood limp:

https://cks.nice.org.uk/topics/acute-childhood-limp/

You will note the advice:
If there is any history of trauma or focal bony tenderness on examination, an X-ray should be arranged.

I mentioned this because the OP said X-rays AND scans - which suggests CT/MRI which tend to be higher exposure. Obviously drs don't like to expose children to this unless they absolutely have to.

I have mentioned Sarcoma to the first gp I saw, and he agreed he should be checked and needs urgent bloods and xray and urged me to go to a&e, pediatrics there told me he looks fine and to go back in a week if things hadn't settled down, I went back the next week and they sent me to minor injuries instead of pediatrics and they told me to go back to my GP, GP sent him for bloods and has been referred for routine appointment at pediatric specialist, that was 2 weeks ago... I've been going round in circles for so long and now it appears to be just a waiting game to be seen by specialists. Part of me thinks that's fine I'll wait the doctors know what they're doing and part of me thinks they can't know for sure without a scan/xray so I should push for that quicker so things can be ruled out. I don't know if I'm just overthinking things or if there's something going on that needs seeing to quicker than they believe it does 😔

How long has he been taking the vit d supplements now?

Op there is an askDrs sub on reddit where you can ask qualified Drs for their opinions.

There is no point hassling your GP though. Your GP asked paediatrics if they would accept an urgent referral and they said no only a routine one. It is with paediatrics now.

The GP has done a range of tests like calcium and various blood tests, so has already screened for various serious illnesses.

Only for about 2 weeks, the pains have since moved to his left leg and right arm, but the right knee is still the most painful

I completely get that the gp has done all he can, he did also advise that if I had any more concerns or if I felt that things were getting worse or more symptoms happening etc then he's more than happy to see him and speak to me again about my concerns, this was the gp I saw today and he was lovely, I think if things get worse he would likely push for a more urgent referral, I will try to call pediatrics and ask to be put on a cancellation register if possible

OP, do you have the money to pay for a private GP appt (or private pediatrician) if there are any private GPs or hospitals near you? My local private GP charges about 175 pounds. You can also go to any private hospital, I think. Our local Nuffield charges 200 pounds for an appt. If a private doc says they think you should have tests, you don't have to then pay for private tests without insurance, because the Nuffield doc will write to your GP recommending them. This might help. (Source: Took elderly friend to a Nuffield twice last year when getting nowhere with GP.)

If you have the money, you could pay for a private CT scan if that's an appropriate test. I just googled it and read that they cost 420-800 pounds. So if you have 1,000 pounds, potentially you could get an appointment and a scan at a Nuffield (or similar). It's a lot of money but the up side is that you'd be able to get it pretty quickly.

Or you could just push and push and push.

Or you could go to A&E.

However you do it, try your best to get him tested for cancer - I guess that would mean some kind of scan, if not CT. I absolutely think he needs those tests. (I'm not a doc, I just agree that this doesn't sound at all normal and that he should have those tests.)

Hi @BethMck does it look like there’s inflammation on your child’s knee? I know you mentioned JIA. This is what my daughter has. It started in her knee joint and moved to her ankle & then her arm. Only down her right side but it can move over to the left as well.
sorry I haven’t read all of your thread but has your child had an ultrasound? My local hospital had no idea. As soon as we took our child to the Evelina in London, she was diagnosed and treated really quickly.

Forgot to say, my daughter had diarrhoea as well. IBS can be linked to JIA.

@ChicLilacSeal there is no point paying for a private appointment unless you can also afford the tests. And currently OP does not know what tests her child needs.
The child has been referred to a paediatrician. A GP getting a letter from a private GP (it will not be a paediatrician for that cost) saying the child needs certain tests will be ignored. The child is on the right NHS pathway.
The only point going private is if you can pay for a paediatrician and any tests they recommend.

@BethMck glad you have a great GP. It really makes a difference

Some pediatric a&e's are better than others. I would travel a bit further tbh and see if the next one is any better? Maybe (as bad as this sounds so please no hate anyone) lie and say there is a history of cancer in your family? My nephew had leukemia and is thankfully very recently in remission but it was caught early enough thank god🙏🏻 better safe than sorry x

Do NOT do what lexle suggests and lie.
Your Drs need an accurate history.

This is probably wrong but years ago my then SIL rang me all worried as her 2yo was dragging his leg and pale and not eating. I said it's sounds like 5th disease but take him to the hospital. The hospital did a spinal tap. It was 5th disease. A lot of even medics don't have it at the top of their list.
Hope your bub is better soon.

It's also called slap cheek disease. Does your LO have red cheeks or any rash? Anyway worth a mention i thought x

Tbh if you turn up in a&e and tell them your child hasn't been able to bear weight on his leg for over a month shouldn't they automatically do an x-ray?