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

I really don't want to cause additional worry as you have obviously been very concerned for a long time but, I have been in your situation- presenting at A&E numerous times, hoping for answers, with a gnawing gut feeling that can't be placated.
I am shocked by how dissmissive the medical professionals have been towards your little boys symptoms. My understanding is that there is a limp pathway for children with unexplained limps and children with red flags for cancer are fast tracked and investigations are carried out when symptoms change or worsen. It would be worth asking your paediatric A&E department about this. If no limp pathway is in place, ask what investigations will be completed and when. I would also make them aware that you'll be seeking advice and contacting PALs. If they challenge or attempt to fob you off, ask if they would be satisfied if their child, who has persistent red flags for cancer, had received the same lack of care and urgency.
My son had a limp for 4 weeks before he was diagnosed with Acute Lymphoblastic Leukaemia and he was initially diagnosed with Transient Synovitis, potential Septic Arthritis and we kept being dismissed because he looked so well. He started to get temperatures and night sweats after 3/4 weeks- he was on calpol and ibuprofen round the clock prior to this, as per advice, but these medicines mask temperatures so he may have got temps sooner if he had not been having regular pain relief. Hopefully your son not having any temperatures is a relief, it might be worth monitoring his temp a few times a day so you have more info to present and notice any changes quickly.
Bloods can change very quickly with Leukaemia so a repeat blood test is essential. My son had normal bloods taken and then pancytopenia (abnormally low HB, WCC, platelets and neutrophils) began to show just 6 days after the initial blood test. It would definitely be worth seeing what his counts were at both (I understand from your previous posts he's had 2 blood tests- sorry if I've read this wrong). Comparing the two sets of results could give more of an insight too.
Does your hospital have a paediatric oncology service? Not many general hospitals do so this may be why they are not treating your son with the urgency he deserves.
I really hope my post doesn't worry you even more and there is an easily explainable cause, with a short, gentle treatment. I hope your son is coping OK after his blood tests, investigations etc, it can be so traumatic. Thinking of you and your family.

Hello, thank you so much for your response, this exact thing has always been in the back of my mind since the start of his symptoms, I have always known that a limp can be one of the first symptoms of ALL and this is why I've always mentioned it to the doctors I see, they all have told me this would show up instantly in his blood work because this is a blood cancer, you would know, he would be pale and look sick and he would be very poorly.. his cbc results are fine so that is ruled out according to them.. but I know that this isn't always the case and this is why I'm so shocked they aren't taking me seriously! It seems like he is just tolerating the pain and I will catch him rubbing it while playing or he will say I need to see the doctor my knee hurts.. it's breaking my heart, I'm really praying it is nothing serious but I have been told so many times it's probably viral, irritable hip, possibly Rheumatic pian from bacterial infection like Strep... but no actual answer, the cbc was normal but the other tests the peds ordered showed Raised ESR and I think it was CRP as well which indicates some kind of inflammation/infection that has been in the body for a while somewhere! They don't know where which is why they are checking his knee for potential fluid round the joint... but they never even sent the referral! I've had 10 weeks of feeling worried sick because I have read so many stories exactly like yours, people keep telling me oh stay off Google it'll just scare you, but these are real life stories I'm reading exactly like yours, not just a list of cancer symptoms! I really appreciate you sharing this because it helps me to know that I am right to be concerned and to be pushing, of course there's every chance this is not cancer but there is still a chance and that is why it needs sorting asap! I just wanted to say how very sorry I am that you and your precious boy had to or are going through such an awful thing!! Although that question is still in my mind I couldn't ever imagine it being a reality! I really really hope your boy is doing well and you are too, sending so much love hugs and strength to you all x

Thank you, I definitely think this is the route I will be taking, I've tried waiting patiently but when they are making multiple mistakes causing massive delays, it really needs to be reported! My child needs answers it's really quite shocking how long it's gone on for!

This is really good to know thank you, I will send an email first thing and hope they call me back, I really have been patient enough but 10 weeks with multiple delays is really taking the mick! I will keep you posted on the outcome of the email! Fingers crossed we finally get somewhere!

This is really sad that you've again had another delay. I would agree about calling pals.

I think your boy needs review by a paediatrician and then may well need more reviews by paeds oncology and by paeds rheumatology.

Sending big hugs to you and your boy. Hope pals are helpful tomorrow

I’m so sorry you’ve had more set backs OP, I feel so angry for you and your boy, this is definitely time to complain loudly.
I hope you get somewhere with the ultrasound soon, but given the antibiotics haven’t helped maybe request another GP appointment for a another blood test to see if the inflammation markers are still there, try different antibiotics perhaps while you are waiting for the ultrasound?

Thank you, I have emailed PALS and hoping to hear back today or tomorrow but who knows. I have waited so long, worrying for so long and my son has suffered for so long, I'm sick of it all! I'm really hoping it is nothing serious but it is still ongoing 10 weeks on and antibiotics don't seem to have helped so something more needs doing now, I don't want to wait anymore! Thank you I'm keeping everything crossed and will keep the post updated

I have sent a massive complaint expressing all of my concerns and highlighting each delay that we have experienced in the last 10 weeks! I'm really hoping this gets things moving much quicker now and that they will want to check his bloods again as rush the ultrasound along. So stressful having to chase things to this extent I've never experienced anything like it

I'm so sorry you're having to battle to get your son proper assessment and treatment.

I have read a lot but not all of your posts so forgive me if I'm wrong, but I've noticed you've mentioned sending / emailing/ writing complaints etc

If you haven't already, make it more personal and speak to people and let them see you're a human mum with a human child who needs to be taken seriously.

I've had experience of advocating for DCs and parents in hospital settings and you need to speak to as many people as possible, not rudely but with emotions, be angry at the situation, be upset.

Connect with their humanity and get them invested in your little boy.

Good luck, thinking of you 💐

I have sent an email to PALS this morning just because I wanted to have it all in writing from the beginning and where we are at now, the different setbacks we have received and what has caused really unacceptable delays. I am going to call the ultrasound department and explain that we waited 2 weeks to be told the referral was forgotten about and that I'm not happy to wait much longer, but when I have done things like this along the way all I get is, "I'm sorry I don't get to decide who gets the appointments first" it's driving me crazy, I've explained to all the doctors I've spoken to how worried I am that it's been going on so long and that I'm scared of it being cancer and they just shrug it off, dismiss my concerns and don't seem bothered at all. I really hope it isn't something as serious as that but how can they be sure if they aren't even sending referrals! Every professional I speak to just says oh bless you it's highly unlikely to be anything like cancer... like they are being patronising and making me feel like a paranoid mum.

Totally understand sending the email so you've got it all in writing. It's absolutely exhausting and shouldn't be so hard.

Very unprofessional of them to patronise you like that.

I remember one nurse telling me "the squeaky wheel gets the grease" so keep doing what you're doing, you are a great champion for your son.

It's not you, it's them, the system is so broken.

That absolutely is true isn't it! I have been patient enough and fought so hard just to even see a pediatrician, it's been really disappointing that even she forgot to do the necessary referral and we have been waiting over 2 weeks for nothing! I really am going to get loud from now on, I'm such a quiet polite person but there is only so much I will let slide when it comes to my kids, I should have made a fuss in the consultants office tbh but here we are! Think it's definitely time to get loud! Thank you

Why should they not say it is unlikely to be cancer if they know that is the case?

It's ok to say it is unlikely to be cancer, if they are then going to prove that what they believe is a fact... I could say I don't think it's going to rain today even though there are clouds in the sky and go outside without my coat and get soaking wet, when it does in fact rain... most people diagnosed with cancer are told its unlikely to be that.. it's unlikely yes but it is not impossible. So due to the fact he STILL has a localised pain and limp 10 weeks later it needs to be ruled out, would you not think? Considering a pain and limp is usually one of the first signs of certain cancers in children...

They say it’s unlikely to be cancer but haven’t actually found out what it is. He is 3 years old with something clearly wrong with him - it is literally their job to find out what, not just brush OP off at every opportunity and be so flaming incompetent that when they say they’ll do a referral they never actually do it. Plus if they’re that incompetent it’s hard to actually trust what they have said.

All these weeks and the poor little thing is still in pain. It’s unacceptable and bloody infuriating.

Fingers crossed it is something and nothing but they need to find out.

Exactly this! You can't just take a doctors word for it when there are ongoing symptoms without an explanation.. my cousin is a fine example of that, she was told for months it is unlikely to be that at your age.. so they wouldn't send her for the correct tests, when she was diagnosed the cancer had progressed over those months and she died a year after diagnosis aged 22 leaving behind a 2 year old child! I will never take a doctors word for it when the symptoms are still there all this time later, now we need real answers with proper factual evidence to back it up

So glad you emailed pals. Hopefully they will help. Are any of his joints swollen or red or hot by the way eg his knee joint? If so definitely mention that when you speak to pals.

I probably should have called them, just more waiting for a response.. I also called ultrasound who said they have requested more information from the consultant and asked me to call back next week to check that's been done and they will get an appointment sorted for him! There is no redness or swelling at all, never has been this whole time, just random pains and limping, it does get worse, where he complains about it more and his limp is more noticeable, the more active he is.

I think it's good that you emailed as then they have all the correct information noted down and it is easier for them to act on. I'd be inclined to follow up with a phone call.though

Definitely. Maybe phone up PALs today and just check they’ve received your email?

I definitely needed to send the email because when it's all written down you can see how bad it looks! I received an email in response just to make me aware the email had gone through but I still haven't heard anything, I'm going to wait until my partner is home from work around 2 and give them a call! I'm absolutely going out of my mind with worry and can't keep waiting around for everyone, I don't understand why nobody is taking it seriously, he's had a limp and localised pain for 10 weeks, in those 10 weeks he's had numerous rashes and cold symptoms that don't go away, the 2 week course of antibiotics haven't helped, nobody has mentioned a repeat blood test and I'm just expected to keep waiting for the ultrasound! Think I've just about lost any patience I had!

Is it worth asking the GP to repeat the bloods in the meantime?

Repeat bloods and a different type of antibiotic just in case it is a stubborn infection and the last ones weren’t strong enough?

I was told my enlarged lymph nodes were unlikely to be cancer many times by doctors, until I got the results of my biopsy and it was indeed cancer. Just because it might not be cancer doesn't mean it isn’t!
And that’s why it needs to be conclusively ruled out and a real diagnosis made.

I'm going to have to call on Monday and request repeat bloods and see if they will prescribe a different antibiotic. So many phone calls over the last couple of months and still having to make more! Didn't think we'd be still at it all this time later, should have had a diagnosis weeks ago!