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 am going back to the gp tomorrow with the letter that the doctor gave me today that instructs the gp to make an urgent referral to peads so I am going to ask for a copy of his blood results as well and also question the vitamin D reading as I'm so confused, the doctor didn't prescribe anything and just said to get 1000iu from the pharmacy, no mention of a supplement plan or retesting to make sure levels are back to normal and symptoms gone, at the moment obviously the main worry is there is a genuine chance it could be something serious and they will scan to rule that out and hopefully then be able to look into other less scary possible causes

Maybe, I think once he's had a scan and had anything serious ruled out they will look at the other less scary causes and hopefully we can figure it out but I'll look into it, thanks

Just to temper your excitement at the upgraded referral. It sounds like ED have spoke to paed who said yes upgrade but they have then told you to get your GP to do it, this is common (work dumping) and whilst your GP can factually report this to paeds if it does not meet the criteria for an urgent referral they can still refuse it. FGS if the team who want him seeing think it’s urgent why on earth do they need you to go back to your GP to make it happen, they should upgrade it themselves.

Tbh I did think this and did find it frustrating, we had been there 3 and a half hours and our little one was very tired and grumpy by the time we were seen so I just figured I would speak to the first gp I saw who was very helpful and told me from the start that he needed to be referred for urgent testing to see if he could get it sorted quickly, although the doctor at a&e did say they haven't put it through as a cancer pathway which would be up to a 2 week wait, it is requested as an urgent referral which could still be up to an 8 week wait, she told me to keep at them, so I think once it's upgraded to urgent instead of routine I will call the department and try to get put on a cancellation list just to try and get seen as quickly as possible. I guess it is reassuring that they haven't put it through the 2 week pathway, and she did say he's likely to need an MRI or CT scan so either of those surely would show anything that would need to be seen.. all the waiting and going back and forth has been pretty stressful but I do feel a lot better about it now

My son has ADHD and vitamin D has been shown to be helpful. He was a teenager though. Neither of us had any joint pain. You have to be careful about vitamin D becsuse you can take too much as it's fat soluble not water soluble so I did get blood test and his was very low.

I'm so confused about the vitamin D, we were told his levels were low, but not how low and how long he needs a supplement etc and then today we were told his levels are normal from the same blood results! I definitely will be discussing this more with the gp tomorrow, I don't want to give him supplements if they are not needed! I'd have thought if my sons levels were very low they would have given me a proper explanation and dosage to follow as like you say giving too much wouldn't be good and not giving enough wouldn't help!

Apologies haven't read all your posts, but have you actually given him Vit D?

I have, as per the blood results and what the gp advised, the symptoms are still ongoing but now been told his vitD levels were normal so I'm unsure about all of that but I'll speak to gp about that tomorrow and see what he thinks with regards to that

Best of luck tomorrow OP 👍

How did it go today? I'm glad you're pursuing this.

I went into the gp surgery and they said I don't need to see the gp they will photo copy the letter from the a&e dr and send it to the gp and he will sort the referral, I completely forgot to ask for a printout of the blood results because I was in a rush this morning, she asked me to call and check the status of the referral tomorrow 🙄 we are moving, just very very slowly!! Nursery took me to one side today and asked if my son is allergic to anything because he came out in a blotchy rash on his forehead, this actually happened in a&e last night and has been happening over the past week or 2, she also said his immune system doesn't seem right because he seems to always have a cold, has been limping at nursery today but she thinks he is hiding the fact from them as he's shy, she's going to make a note of the limp and rashes if they notice them, the doctors don't seem concerned about this and aren't connecting the knee issue and the rashes and viral infections together, their impression is that he may have a toddler fracture or ligament injury and that's why they are requesting a scan of the knee.. maybe he's just having a hard time this winter and it's a coincidence that there's an issue with the knee as well. Sorry for the long post, it's so annoying having to wait so long for answers and having to keep track of everything, not to mention the worry on top wondering are all the symptoms connected or is it unrelated to the leg! Hopefully we will find out soon.. I won't hold my breath!

Sorry just to add the rashes appear randomly on his body, sometimes his back and tummy as hives, or blotches on his arms and face.. a&e Dr said possible lymph rash?

I’m no doctor but the knee, rash and low immune system all together would really worry me. Especially as now Nursery are concerned. Please continue to be persistant, something really doesn’t seem right.

I have voiced my concerns over and over to gps and when we have been to a&e, they just shrug it off and said he's being referred urgently for what they are pressuming could be a possible toddler fracture, ligament injury or Juvenile Arthritis, they certainly don't think it's anything as serious as cancer so I do hope they are right

I know you said going private was not an option OP, but given your latest update is there no way you can beg, borrow or steal enough money to at least get him an initial consultation? Would a go fund me work?

Our nhs is broken 😡

I got a text today to say the gp has sent the referral and it's been upgraded to urgent, if I haven't heard from pediatrics by 25th March I have to call them!! As they haven't sent it through the 2 week cancer pathway, an urgent appointment can take up to 2 months! The NHS certainly is broken! They say they suspect Juvenile Arthritis but there is no swelling or warmth around the knee and it isnt worse in the morning and settle down as the day goes on, they also suspect a toddler fracture or ligament injury.. but they don't suspect cancer even though he keeps getting viral infections and viral type rashes.. I just don't know how I would be able to go private, everyone around us is in the same boat as us, and I wouldn't feel right doing a go fund me because it could be that I'm just being over paranoid and the illnesses could be totally unrelated to the knee, I really don't know what to do other than trust the doctors and hope they are right by not rushing things, although it's so horrible to hear him tell me his knee hurts all the time I just want to know what's causing the pain, poor boy! 😔 I may try get in with the first gp again and see what he thinks to all the symptoms together and see if there's anything more that can be done to push them but I'm guessing it will be a no, I've hit a brick wall every time I go and doctors don't seem to think it needs seeing to quickly..

It's good this is being treated as urgent but two months is an insane wait. Has the GP indicated how quickly an urgent appointment is likely to come through? If it is 25 March, then could you get a zero percent credit card and use it to pay for a private consultation? You are probably looking at £200-£350. Sometimes, you can use findings from a private appointment to get treatment on the NHS. It's worth finding out. Recently, a friend did this for an MRI and was able to use the results in discussions with her NHS GP and to access treatment on the NHS too.
Regarding the viral infections, are other children in nursery getting these? Could the setting let you know?
My kid went through a couple of atrocious winters catching absolutely everything but I found a great multivitamin and made sure they had their flu vaccine and way earlier than school was giving it. It has made such a difference to overall health this winter.

I am hoping they will contact me way before March but who knows! It is crazy to me to make him wait, if they suspect some kind of injury to the knee then he could be making it worse while it's left untreated?! Nursery said they noticed a blotchy rash that suddenly appeared on his forehead and I said he has been getting a few different rashes that come and go on his body for the past week or 2 and I had said he seems to be poorly a lot too and she said she had noticed his immune system didn't seem great the past few weeks, she didn't mention anything about other kids being poorly but nurseries are notorious for spreading viruses aren't they so it could just be that the winter bugs are rife. I wouldn't even see that as an issue if it wasn't for the unexplained pain in his leg, I really don't know what to think of it all tbh but I know it has made me really paranoid and I'm feeling really run down with the stress and worrying, if needs be I will take him back and have a serious talk with the doctor, just see how we get on the next few days I guess

Do NOT go into debt. A consultation will tell you nothing anyway. There will have to be various tests whose costs would quickly add up.

It's just so frustrating isn't it having to wait so long, especially when it could be something that is getting worse over time, like an injury or cancer.. part of me is thinking it's just winter bugs and a coincidence that he's having the leg issue at the same time but part of me just won't rest until I know for sure, and if it is an injury I will feel so guilty that he's been hobbling around in pain for nearly 2 months already and could potentially be waiting another 2 months or more to get it treated! I wish I did have the funds available to just pay private, I'd do it in a heartbeat for that peace of mind and getting my son pain free bless him!

@BethMck please do make sure you are looking after yourself. Easier said than done I know. Do you have a partner? What do they think? Are they supporting you emotionally through this? Or even a good friend or family member you can chat to and do things with to keep your mind from constantly worrying. It's good to have someone in real life as well as us online x

I've not read the full thread but my son ages 3 couldn't bear weight on his legs. He was very tired, had nose bleeds and red spots on his legs. It was diagnosed as HSP. An autoimmune reaction to a simple cold virus. We had to monitor his blood pressure for several weeks and months after. If never came back again but it was a strange thing.. not sure if HSP has been mentioned on here.

Thank you, my partner is very supportive and although he is worried and frustrated that things aren't being done quicker he does think I'm over worrying, I do tend to think the worst in most scenarios and it really could be that it's something simple and I've just read a lot of stuff and now putting symptoms together when they could be unrelated but I guess you just don't know until the correct tests are carried out. I have been constantly looking up all kinds of potential causes and it's on my mind alot, so hard when it comes to our kids isn't it

I have read about things like that, very strange that those things can happen from a simple cold isn't it! Do you know how long his symptoms lasted? He's had the intermittent pain and limping for 6 weeks, he had just recovered from HFM and developed a cold and they suspected irritable hip but now that it's gone on so long they think maybe a toddler fracture or arthritis, he has had a stomach bug and 2 more colds since it started, the last cold he had seemed to be clearing up and then it's come back with a vengeance poor lad, and he keeps getting a blotchy rash and a hives like rash that come and go

That's so frustrating they've said an urgent could take so long.

Can you call the paediatric secretaries today and ask if it can be as soon as possible as you're worried about serious things like JIA and cancer?

Often what then happens, the secretary will put a post it note on the referral letter and put it on the consultants desk to decide whether to bring it forwards. So a back door to getting his referral taken seriously...

Oh bless you. This sounds so frightening. I hope you get some answers soon. Had a similar situation with one of my DDs. Was eventually diagnosed with arthritis but the very long wait for diagnosis was so scary. Hopefully the appointment comes through soon.