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 get those petit filous yoghurt drinks, take the lid off and syringe it in, lid back on. The key is for her not to see me do it, I then offer her a yoghurt drink out the fridge and she’ll drink it without a second thought. Nothing else has ever worked for my 3YO!

This is what we did, took the lid off syringed it in while he wasn't there then shook it up to mix it in, he had a bit tasted it straight away and spat it out and said don't like it, I've tried everything so all I can do now is try get them changed asap and hope they taste better

Depending on your child and how big he is would be swallow a tablet. When I was three I had renal reflux and needed to be on antibiotics for a year and had to be held down to take the liquid as I hated the taste. The pharmacist suggested tablets and I used to swallow them with a few smarties afterwards no problem. Might be worth a try if you can get small enough dose in tablet form.

Is there any kind of food he really likes? I know it's not ideal but we bribed my son with a piece of chocolate after every antibiotic when he was 3. We told him we knew it was disgusting but he had to take it and he can get chocolate after. We'd set up the chocolate so he could see it. He'd down the antibiotics and go straight for his chocolate.

Oh dear, OP, it’s so difficult isn’t it. Hopefully they can change the type so they’re not so strong tasting 😝

Managed to get the antibiotics changed to banana flavour, he took it with no problem, finally! Hopefully this will help ease his symptoms, doctor looked in his throat and said its very slightly red but he wouldn't say looks anything like Strep... whatever is going on with him I'm hoping the antibiotics will sort it out and see if the ultrasound reveals anything

Oh that’s good news. Hopefully they’ll start working in a couple of days 🤞

Phew! Hopefully he'll perk up very soon now he's got ones he can tolerate. I think I mentioned up thread that my DC was very similar in that there was no obvious bacterial infection. But the antibiotics worked miracles within days when he'd been ill for a really long time. I hope it's the same for you.

Yes I remember your comment saying this, I really hope it's the same with my little boy, nobody seems to know what is causing all his symptoms but infection/inflammotary markers are raised quite high so she is guessing it's some kind of bacterial infection and is hoping the antibiotics work, poor boy I can't remember what he looks like without a snotty nose, he's had a cold for so long, he's always sore under his nose (been putting sudocrem on but he hates it)

How’s he doing @BethMck? I hope the antibiotics are working.

He's still snotty and breathing off because he's so stuffy, still has the knee pain that comes and goes and the limp is definitely more noticeable the more active he is, haven't noticed any rashes since the antibiotics.. still no appointment for his ultrasound, so still just waiting 🙄 I don't feel that the antibiotics are doing much tbh but he still has a couple of days until the course is complete! All the waiting about is so stressful, I need this appointment to come through quick! I thought I would see a drastic change in his symptoms but I haven't so far

Oh no I was hoping he’d be on the mend. Maybe he needs a different type of antibiotic again?

Fingers crossed you hear about the ultrasound very soon.

My 6 month old was waiting ages for an ultrasound. When I called the ultrasound department to find out what was going on, they told me they hadn't received the referral and that as a matter of policy, they prioritise babies and toddlers. Turns out the referral didn't go through! I called back when I finally had the referral letter and they gave me an appointment for 10 days time. It wasn't even a particularly urgent issue.

Perhaps if you call the ultrasound department and explain the situation they might find you an earlier appointment? 3 is still tiny, they may share the same policy as my local hospital.

So frustrating having to wait so long between appointments, he's been to the doctors and hospitals so many times in the last few months and we still have no idea what's going on! When the pediatrician called me to discuss his blood results with me she told me I'll send the referral for the ultrasound now, I thought I'd have had a letter by now with an appointment at least but still nothing, I had thought about calling them but she did say it could be 2-4 weeks of waiting, I think I will give them a call tomorrow though just to make sure it's gone through as when he was supposed to be referred as urgent to peds they had put it through as routine, twice!! Which I only found out as I rang them and this obviously delayed things further! Once it went through as urgent he was seen within 48 hours!

I've just called the ultrasound department as PP suggested as we have been waiting over 2 weeks for a letter and she told me they haven't received a referral, my son is not on their system and I need to ring the pediatrician to tell them to refer him! I know the NHS is on its ar...bum! But I should not be still fighting this hard when it has been going on since the 17th of December!! It's an absolute joke.

Omg!!!!! What the hell is wrong with them? 😡😡😡

If I were you I’d contact PALS at the hospital now and put in a complaint. This is unacceptable.

It's absolutely shocking isn't it! 10 weeks he's had this issue and it's still going on! The amount of times I've been sent back and forth and then they messed up the peds referral twice and I just called the pediatrician and she was like I'm so sorry they are right I didn't send the referral I will send it right now! So I have to call ultrasound again tomorrow to make sure it's gone through and then tell them I want him seen asap because we have already waited 2 weeks because she forgot to send the referral!! I'm in shock at how terribly they have all dealt with this!

Thank goodness you rang them! I hope they can get him in very soon. When is your followup appointment with the paedeateician?

She said if the scan shows anything she will contact me by phone, if it is clear I will get a letter, then he will have a follow up in 3 months time.. but the antibiotics haven't helped the pain and limp, he was sat playing earlier and rubbing his knee and when I just put him to bed he was asking to go to the doctor because his knee hurts so I've given him ibuprofen.. just feel like nobody seems to care. If they say they can't get him in any quicker after it's been delayed by 2 weeks already then I think it's time I kick up a fuss! I've been messed about alot since his symptoms began and I think it's disgusting that he still hasn't had things ruled out 10 weeks later!

Please go to PALS as previous poster says. Highlight some of the delays etc. When you go to PALS the managers on the department have to sort it out. I work in a hospital and when my team gets them they have to be sorted out straight away. After all this to and fro you and your son deserve some quick answers. It's not like you haven't tried to navigate the system properly and there have been many mistakes along the way by the clinicians. It's not good enough and management need to know about these things. Promise me you will do it tomorrow?

Nothing to add other than to say that I'm really sad for your little boy and what he's going through. Pain is horrible at any age. I hope he gets better soon!

All of this should have been done when I went to a&e the second time after the pediatrician there told me to go back and when I did they sent me to minor injuries instead and since then everything has just been a constant fight to get him to the right places, I've never experienced such poor care through the nhs with any of my children and my eldest is 13! They keep telling me it's unlikely to be anything sinister but they can't rule that out completely without the appropriate tests that they are delaying so badly! I'm at my wits end, I really think this is the route to take now, I have waited patiently and been nice enough the whole time, I need to put my foot down and demand answers poor boy is 3 and something has been bothering him for the last 10 weeks, even if it is nothing sinister it should have been identified at the very least in all this time! I'm honestly so shocked! I've never made a complaint to the hospital, never needed to, how do I go about it please? Thank you

Editing to say a quick Google search brought up all the information I need to send a complaint to my hospital so I will do this tomorrow and hope that this moves things along and gets him answers asap!

Thank you so much! I feel so sorry for him I just want to get him better and lord knows I am trying! Bless him x

If you google ‘the hospital name PALS’ it should come up with a telephone number or email if you prefer. Tell them everything that’s happened.
When my late father was in hospital we contacted the PALS team after some shocking treatment and they sorted it out straight away, like the next day. They were fantastic.

I really hope they can help you get somewhere.

Brilliant. Sometimes you have to complain. I know most of us don't like doing it. The hospital needs to know about failings as well or they can never improve. Anyone with kids who deals with it will understand as well. There is a lot more good will for children. Noone wants to see a kid in pain. Let us know how you get in. If you don't get a same day phone call I will be amazed.