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

Exactly my point, my cousin was told the same for months, and another cousins little boy, she was told its unlikely to be anything he probably just bumped himself, 4 months before they did a blood test and biopsy and got a cancer diagnosis! I doubt anyone is told it probably is cancer, I get that they'd want to rule out simple things in the early stages but 10 weeks later you'd think they'd want to look at that being a possibility and rush to rule that out as like they say themselves it's better to be caught early! I really hope it's something far less scary but at this point cancer needs to be ruled out, if nothing else it will stop the unnecessary worry I am experiencing not knowing

Oh crumbs - your poor little boy :-( I had similar with one of mine when he was about the same age. Persistent pain in his knee etc. I was told first it was water on the knee, then a sprain, then an infection. In the end I took him to a paediatric AnE as it was still just as bad 3 months later. They x-rayed him and it turned out he had perthes disease in his hip. He's needed a couple of surgeries as time has gone on, but is doing much better now several years later. He'll need an early hip replacement at some point, but we were relieved to get an answer as it meant we knew what we were working with. Hope they get to the bottom of things for you soon. You feel so helpless when it seems no-one is listening.

Look into occult tethered cord and ehlers danlos. Also Epsom Salt baths may help the pain. Poor boy :(

Aww bless your little boy, I'd never heard of that until my son started with this and a few people mentioned it, thankfully this is one of the things that has been ruled out as he's had an xray of the right knee and both of his hips, nothing showed on there, so that would rule out Perthes and fractures of the bones, they say an ultrasound may show things with the ligaments/soft tissues or fluid round the joint, so fingers crossed it shows something that is simple to sort out and that gives us a diagnosis because I'm really scared now and I just need an explanation! I really hope your son is doing well, this sounds like a horrible thing for a child to go through bless him

Thank you, it's getting to a point now where he will start to limp and not mention it and I'll ask him if he's ok he says no and I'll say oh no what's wrong and he gets frustrated and says it's ok, like he doesn't want me to fuss and it's annoying him, poor thing I just want to get him better but it's just taking so long to get the tests he needs to get a proper diagnosis!

I commented earlier on in the thread and can’t believe this is still going on! This is ridiculous! I really feel for you and hope you can start to get some answers soon.

Ah I'm glad that's ruled out at least. So incredibly frustrating for you, and so difficult seeing your little one in pain :-( Let's hope you get a diagnosis very soon - and that it's something that can be tackled and worked with. Thinking of you and will keep an eye out for updates. Big hugs xx

Better to just offer a cheerful hug if he’s struggling rather than keep asking what’s wrong. He’ll be more likely to tell you if it’s anything new and you’ll feel less frustrated because you do have control over being able to offer comfort

When I posted this it had been 3 weeks with the limp, it's now been 10 weeks!! I can't believe we still don't have answers and are still experiencing such unnecessary delays! I was worried from the beginning but each day I'm feeling more unsettled, I'm really scared that it genuinely could be cancer but none of the doctors seem to care about that.. I feel like I've hit a brick wall so many times and having to fight through it every time, it's mentally exhausting! I'm going to call ultrasound on Monday and demand an urgent appointment, I'm also going back to the gp to demand urgent repeat bloods, I'm not waiting about anymore I'm really going to get my voice heard! This level of worry is not healthy if they can rule cancer out I will be able to rest but until they do I can't just sit about waiting for nothing with no answers! Sorry for replying to your comment with a massive rant 🤣 all of you guys on here are absolutely great and I really appreciate everyone taking the time to message and try to help with support and advice

Yes I absolutely agree with this! I thought this myself today, he clearly is frustrated when it's happening and is thinking mum will you stop going on about it I'm trying to just get on with things! Poor kid, it's breaking my heart but I told myself that this is what I was going to do, instead of questioning him about it I'll just give him a hug and let him know mummy knows and I'm here.. I'm really trying so hard to get him some help I just wish I could speed things up somehow

@BethMck I've been thinking of you. Have you considered going to a different A&E further afield and just handing them the letter so they can see the detail, and not leaving until further tests are done? You just need to find that one doctor who listens

I was just saying this to my partner last night, when they took us to minor injuries the 2nd time in a&e I should have insisted he saw a pedestrian then or taken him to a different a&e the 3rd time we went, but I am calling ultrasound department tomorrow and telling them I've waited 3 weeks and won't be waiting any longer, if they don't get him in quick I'm going to a children's a&e! I was wondering if anyone on this thread would know if the pain in his knee getting worse after being active would be reassuring and indicate that this makes it less likely to be caused by cancer? Obviously that's my main concern but part of me thinks if it was that then after 10 weeks surely there would be more telling signs? My head is a wreck thinking about it 24/7 I can't sleep, I really need that ultrasound doing. Also ringing the gp tomorrow to ask for a repeat blood test to check there are no changes there

This is a screenshot from a video I took of him limping on Friday, we had taken the older kids to school, he had been running around and riding the bikes in the yard, this was him walking on the way back, look how sad he looks! He was in agony yesterday after riding his scooter round the park and charging around like a maniac, I feel so helpless

I really, really feel for you OP.

You absolutely shouldn't have to do this, and I know it's a lot of money, but if you desperately need to put your mind at rest whilst the NHS is dragging it's feet, then perhaps you could look into a private ultrasound scan?

I've had a quick look and there's a specialist near me (London) that offers paediatric scans for £200 and this includes a consultation with the consultant Radiologist. Obviously this shouldn't take the place of the NHS scan, but it could reassure you there's nothing obviously wrong while you wait, and in the worst case, could flag any concerning signs that you could then present to the paeds team and get your little boy fast tracked.

I would be going out of my mind, the same as you. I have a 2yo boy. I'm so sorry you're going through all this uncertainty. If you can afford it, go for the private scan. The stress and worry must be overwhelming.

Honestly OP, I'd just take him to a different child's A&E today - your GP is being so unsupportive and could add more days/weeks of waiting for blood test results. Which county are you in?

Bloody awful. Poor little thing.
If you don’t get anywhere tomorrow I’d do what @Thegreyestate suggests and maybe try a different A&E? There was a thread on here last night where OP took her DS to A&E and it was an infected knee joint. So they can pull their finger out when they want to. https://www.mumsnet.com/talk/childrens_health/5284832-worried-about-toddler?reply=142554407

Ultrasound dept told me to call back and they will sort him an appointment so I'm presuming they will be happy to get him in rather quickly considering we have waited 3 weeks already! I'm so angry! I'm calling them back first thing in the morning and hoping they will get him in in the next day or 2 otherwise I will be taking him elsewhere and ringing PALs to follow up that email! Last time gp sent for bloods the hospital got us in straight away and we had results back by text the next day, I'm honestly so stressed and it's all I can think about, I keep thinking how many times we've been delayed with appointments and it gets me so angry, it's really not fair! We are in West Yorkshire- near Leeds/Manchester.. someone I know had a private ultrasound on her daughter recently and paid £350 without the consultation! I'm going to let them know that I'm mad tomorrow they will be sorting this out and if they don't I'll have no choice but to find the money, or go to a different a&e and refuse to move! This is hell I've never known anything like it and they can't blame the nhs being over crowded because it's the doctors "forgetting" to send correct referrals!

Here's where I'm at today... rang ultrasound department, they told me they are STILL waiting for the consultant to send over the information they need before they can book him in! I rang PALs and explained how worried I am, my son has numerous symptoms that should be seen as red flags but nobody is listening to me, I've seen multiple doctors over 10 weeks and been ignored, explained the delays with referrals and said he needs this ultrasound now, she said she was going to speak to the pediatric manager and request repeat blood tests and get the consultant to send the information urgently, they will call me back when this has been done, but it could take up to 3 days.... I have seen many posts on here about limping children and most seem to have had all the relevant tests to rule out everything way quicker than this! If they don't book him straight in for the ultrasound the next step is to go to a children's hospital and refuse to leave without a diagnosis

Still waiting for the consultant? Bloody useless.
It’s good you spoke to PALs, I reckon things will start moving now they are involved. Even if it does take 3 days to hear anything, that’s a damn sight quicker than the rest of them!

I know absolutely shocking isn't it, they've requested more information from her before they can get him booked in and she just hasn't bothered to send it, same as she just didnt bother to send the referral in the first place 3 weeks ago.. I wanted to ring her office myself but I thought actually it might be better coming from her manager, surely the manager will say they've been contacted by PALs with a complaint and make her get a move on! I'm telling myself it'll just be a simple infection that needs stronger antibiotics because constantly worrying about the worst case scenario is driving me insane! I'm just worried that the ultrasound won't give us any answers because I think she said she would see us back in clinic in 3 months if scan was clear

🥺

Have you had an x-ray of your child's hip?

Just wanted to give you some hope, we were on and off limping and in pain for a good while. Pain in the lower leg and knee.

Eventually a doctor took us seriously and referred for a hip x-ray, turned out my son had Perthes disease. We are two years down the line and my son's hip is in the regrowth stage, so hopefully back to some running and jumping soon.

Hey, thank you! Yes when we saw the consultant 3 weeks ago she ordered blood tests to check his infection markers and an xray of his hips and knee, his infection markers were raised but xray all looked normal, he had a 2 week course of antibiotics which haven't done anything and just waiting on an ultrasound to check for fluid in the joint! I think it is probably an infection in his joint but they keep telling me it would be swollen and warm to touch, which it isn't.. so frustrating not having answers all this time later! I'm exhausted 😔

Have PALS still not got in touch with you? Normally they're very good and fast. Could you call pals tomorrow?

They didn't respond to my email so I called them myself yesterday when I found out ultrasound were still waiting for the consultant to send over the relevant information! They agreed it's unacceptable and I've already experienced massive delays so she was going to speak with the pediatric manager to get them to speed the consultant up and I told her to request repeat blood tests while she was at it so I have to wait to hear back when that's been done she said it could take up to 3 days