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AIBU?

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Original poster

Something not right with 3yr old

419 replies

BethMck · 22/01/2025 22:48

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

OP posts:
Lassango · 04/03/2025 21:05

I sort of feel silly suggesting this but did the knee pain coincide with new footwear? Does he always wear the same air force one trainers for walking and running everywhere? Do they have elastic laces or any proper laces or velcro that you can tighten?

I have scanned through most of your updates and the hospital does not seem to have found any medical problems. I am wondering if this is more biomechanical.

Dayfurrrrit · 04/03/2025 20:53

Has juvenile arthritis been mentioned by any if the doctors? Possibly one to ask about.

Original poster
BethMck · 04/03/2025 20:44

thistlepiedpiper · 04/03/2025 20:33

Great news you are feeling more reassured now op. And also that ds was feeling a bit better today
Try to manage the bad days but enjoy the good days he has when not in pain. You've worried yourself enough the last 10 weeks, it's time to give yourself a wee break and hopefully get a good nights sleep tonight ❤️

The problem I have is he's limping and in pain every day, he can run and jump and walk fine then he'll suddenly be limping and saying his knee hurts, but every time he's seen a doctor he isn't limping, so I have to show them videos, I haven't noticed any swelling or redness etc so from a doctors point of view there's nothing clinically wrong, his infection markers were raised and esr was unreadable this time, his lymph nodes in neck and groin are raised, so this would suggest there is some kind of infection/inflammation, but the fact the knee isn't hot to touch, red or swollen they don't think it's a joint infection.. it's so strange I have no idea what it could be, but like I say I'm happy that the cbc hasn't shown anything different to the last one as that would definitely have changed by now if it was anything sinister! We just have to wait and see if the scan gives us any answers. You've all been great these past few weeks for giving me advice and support! I think a hot bubble bath and a big sleep is needed 😂

OP posts:
BlueberryPieface · 04/03/2025 20:37

That is good news, you can finally relax that it’s not cancer x

Hopefully the scan will show up finally what it is, but for now take it easy. Fgs you’ve been through it.

thistlepiedpiper · 04/03/2025 20:33

Great news you are feeling more reassured now op. And also that ds was feeling a bit better today
Try to manage the bad days but enjoy the good days he has when not in pain. You've worried yourself enough the last 10 weeks, it's time to give yourself a wee break and hopefully get a good nights sleep tonight ❤️

DollydaydreamTheThird · 04/03/2025 20:09

BethMck · 04/03/2025 20:02

So just an update, one that I think is reassuring but unfortunately not close to any kind of answer! They took us to the peadiatric ward and assessed my son, obviously his obs were fine and he showed no sign of anything at all wrong with him, I showed the doctor all the pictures of his rashes and videos of how my son limps, how it started in December to how it is now and that it's more frequent etc.. I told them my concerns with these being symptoms of Leukemia and he agreed to do a repeat blood test, he said we could go home and he will call us with the results in a couple of hours, he called when we got home to let me know his cbc was all fine with nothing concerning showing up there, he said they couldn't get a reading with his ESR because there wasn't enough blood taken.. this surely has ruled out Leukemia as that would show up in the blood by now, so I'm happy about that! But he did say as my son didn't present as unwell we just have to wait for the scan which will be in 2-3 weeks and we'll get an appointment by letter.. so it didn't help to get the scan any quicker but it did help to put my mind at ease that there's nothing scary going on with his blood work! No idea what could be causing this but I do feel reassured that it's not cancer so I guess I'll be able to at least get a decent sleep tonight!

Good work OP. I'm glad you feel reassured and from what you have said the paediatrician has been less dismissive than some of the other clinicians you've seen on this journey. Good that they phoned you with the results as promised as well. Hopefully the scan comes around quickly for you and your boy.

Original poster
BethMck · 04/03/2025 20:02

So just an update, one that I think is reassuring but unfortunately not close to any kind of answer! They took us to the peadiatric ward and assessed my son, obviously his obs were fine and he showed no sign of anything at all wrong with him, I showed the doctor all the pictures of his rashes and videos of how my son limps, how it started in December to how it is now and that it's more frequent etc.. I told them my concerns with these being symptoms of Leukemia and he agreed to do a repeat blood test, he said we could go home and he will call us with the results in a couple of hours, he called when we got home to let me know his cbc was all fine with nothing concerning showing up there, he said they couldn't get a reading with his ESR because there wasn't enough blood taken.. this surely has ruled out Leukemia as that would show up in the blood by now, so I'm happy about that! But he did say as my son didn't present as unwell we just have to wait for the scan which will be in 2-3 weeks and we'll get an appointment by letter.. so it didn't help to get the scan any quicker but it did help to put my mind at ease that there's nothing scary going on with his blood work! No idea what could be causing this but I do feel reassured that it's not cancer so I guess I'll be able to at least get a decent sleep tonight!

OP posts:
KatieB55 · 04/03/2025 19:01

I agree with other comments to trust your instinct.
Call the paediatric dept secretary and ask if they have a cancellation list, if you are able to get to the hospital at short notice.

FofB · 04/03/2025 18:53

Op, well done for your persistence; I hope you manage to get some answers soon,

BlueberryPieface · 04/03/2025 18:23

BethMck · 04/03/2025 14:32

Update, peads ward manager rang me and asked me to bring him in at 4pm to be assessed and try to speed up the scan.. see how this goes!

Amazing what they can do when they’ve been given a bollocking advised to by PALs, isn’t it?

Fingers crossed you finally get somewhere this afternoon🤞

Wibblywobblybobbly · 04/03/2025 18:00

I'm so glad they have called you in. I hope the appointment went well.

BoilingHotand50something · 04/03/2025 17:30

Goodness me this is ridiculous although not unlike the journey to get my DD diagnosed with arthritis. Good luck - hope you start getting some answers and appropriate treatment now.

thistlepiedpiper · 04/03/2025 15:24

BethMck · 04/03/2025 14:32

Update, peads ward manager rang me and asked me to bring him in at 4pm to be assessed and try to speed up the scan.. see how this goes!

Excellent news! Sad it's taken this long and complaints to get there but best to try and focus on what comes next and be glad things are finally moving along
You've been a great advocate for little ds - be so very proud of yourself
Wishing you and ds all the best for today. Awaiting updates from your app xx

DollydaydreamTheThird · 04/03/2025 15:17

BethMck · 04/03/2025 14:32

Update, peads ward manager rang me and asked me to bring him in at 4pm to be assessed and try to speed up the scan.. see how this goes!

Good luck OP. Hope you get somewhere. 🙏

TheWonderhorse · 04/03/2025 14:50

BethMck · 04/03/2025 14:32

Update, peads ward manager rang me and asked me to bring him in at 4pm to be assessed and try to speed up the scan.. see how this goes!

Great news, finally!

Crossing fingers for at least a plan and someone to properly listen to you today.

Original poster
BethMck · 04/03/2025 14:32

Update, peads ward manager rang me and asked me to bring him in at 4pm to be assessed and try to speed up the scan.. see how this goes!

OP posts:
JoyousGreyOrca · 04/03/2025 13:53

It may not be available any quicker privately if only one medic has the skill to do it. Tell them you will take short notice cancellations.

Original poster
BethMck · 04/03/2025 12:41

PALs have definitely been on the case since yesterday morning, I've called ultrasound just now and they said they've booked him in for 26th of March!!! The nearest available appointment! I told them I'm not prepared to wait and she said her manager has spoken to her about the delays I've had so far, she's taken a lot of info and going to speak to the manager and the doctor available to do the scan and see if they can come up with anything sooner and she will call me back this afternoon! She said they only have one doctor who can do the scan so I'm not holding my breath, I was hoping they would squeeze him in this week but it's looking like I'm going to have to go elsewhere or find the money and go private because this is unreal! He's had an unexplained pain and limp since 17th of December!! I feel completely drained trying to fight this hard just to get some kind of diagnosis! It's totally unacceptable, he's 3 years old!! I am in absolute shock that this has been left to go on so long, although I am grateful that PALs have stepped in and got everyone communicating properly at least! She did say I was supposed to have been contacted by peds this morning, have they called me? Have they balls! Unbelievable! Sorry for the constant rants on here but I feel like it's the only place I can rant and you are all really supportive which I really appreciate ❤️

OP posts:
Difficultwill · 04/03/2025 11:23

I am so sorry you are having such a dreadful time and your son is in pain all the time. Could he have Still’s disease which is juvenile arthritis. It can also give you rashes and raised ESR and CRP (inflammation markers)?
They may be considering a MRI scan rather than an ULTRASOUND.
Leeds has a children’s unit and if you are not getting anywhere I would take him there and refuse to leave until they have repeated bloods and done a scan on his knee.
Good luck and I am thinking of you and your son

Original poster
BethMck · 03/03/2025 23:25

jellyjester · 03/03/2025 23:19

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

OP posts:
jellyjester · 03/03/2025 23:19

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

Original poster
BethMck · 03/03/2025 22:29

YoungOts · 03/03/2025 21:41

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 😔

OP posts:
YoungOts · 03/03/2025 21:41

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.

Yerblues · 03/03/2025 19:28

BethMck · 02/03/2025 12:37

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

🥺

Original poster
BethMck · 03/03/2025 14:14

BlueberryPieface · 03/03/2025 13:40

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

OP posts:
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