Aibu in asking if you've ever seen anything like this before?

[littlebunnyhophophop]

My son is 4 we first noticed this back in January where we took him for an X-ray which was clear , and it's still ongoing nobody including his paed seems to know what it is , he also has unexplained fevers , chronic diarrhoea (already been tested for coeliac and ibd) and has dropped from 18.5kg to 16kg in the last couple of months - my question is has anyone ever had experience with this before , his gp is phoning back in the morning as I asked her for a private referral (she told me this morning there was nothing wrong ) she is now concerned as he's developed a mouth ulcer aswell

I have Lupus and my lymph nodes can swell up during a flare.
I hope you get some answers soon

Ah, I don't use the app, I'll pm you and see if you get a little notification somewhere? Would that be helpful?

This does not cover the weight loss or drowsiness etc but a friends 6 year old had something that looked similar and turned out to be a cervical rib. really rare, doesn't always show up on xrays but they can see it on certain scans.

My friend was absolutely terrified that it was something really bad, but it was just unusual.

I think you need to push for proper scans to see what is going on.

That would be helpful @crazyspaniellady

@Cocolepew my mum has SLE ! We asked about it about a year ago he was having swelling in his left knee (he was also born with a clubfoot) so most likely related to that , the rheumatologist said she doubted it as he didn't have stiff joints and its apparently pretty rare in children

My mum normally helps at appointments , unfortunately she was outside in the car with my youngest at the time , I'll speak to the gp tomorrow morning if she doesn't give us any referrals or whatever then I'll set my mother on her , my mums also got a law degree they don't normally argue with her

I have PMd you OP. I hope you get a diagnosis soon!

Everything feels like a fight in the NHS at the moment.

I hope you get some answers soon o

My grand-daughter was horribly poorly last year (she was later diagnosed with coeliac disease) and my poor DD was getting terribly frustrated with the lack of the progress through the GP referral system. We found a private paediatrician locally who charged around £180 for a 45 minute appointment, and it was such a relief. My grandaughter gets her ongoing treatment through the NHS but just getting the initial diagnosis and confirmation was a lot quicker, and having a decent amount of time/thorough examination was hugely reassuring. I don't know if that's something you can try?

Best of luck. I hope you can get some reassurance.

It's time to summon up all your assertiveness and refusal to be fobbed off now littlebunny. When you see your GP say you need a referral and that they have a duty of care to your DS to act thoroughly on any potentially serious symptoms. i would ask if it were their child who had exactly the same history/symptoms, would they be happy to make a diagnosis that there's nothing wrong based on one xray? They need to take full responsibility for your child's health and refer to someone who is able to carry out any appropriate tests and make a diagnosis and if they can't do that, to refer to a centre of excellence that can. Good luck. It can be very hard to be taken seriously sometimes, regardless of age, and sometimes as patients or parents we have to fight far more than we should have to, for appropriate action to be taken.

I would make an appointment with a consultant at a private clinic if you can afford it - might be £200/250 but so worth it. If your work has a healthcare plan you might be able to claim the money back.

Hi everyone sorry for not writing back last night I was exhausted ! Still waiting on gp phoning! I don't want to go private if I can help it we're working class I don't work in my sons carer along with being home with my 20 month old so only 1 income coming in anyway , I've got some money coming in that's supposed to be for our passports but if it needs to be used then so be it , will update once gps phoned!

Hope you get somewhere with the gp today. If you don't I would be tempted to go to your nearest paediatric A&E I'm sure they will take you seriously. A swelling and weight loss in a 4 year old needs investigating further

Is there any pattern to the fevers or any other symptoms with the fevers? My DC had a fever syndrome and it affected lymph glands (although not looking like this), bowels, joints, appetite, energy and many other symptoms. We went private very quickly as it was obvious NHS didn't have a clue and there was extensive testing bloods/scans or ultra sound of chest/stomach, urine etc before diagnosis. I have auto immune disease and there appears to be correlation between family members with lupus/RA etc and kids getting periodic fever syndromes.

No , no pattern whatsoever they just come and go we've been to docs/NHS with them and even though there's no sign of an infection runny nose/sore throat etc were always just told viral infection 😕

Please try to escalate this. It looks a lot like what my son had. Ask them to investigate the lymph nodes: I don't want to be alarmist but in my sons case it turned out to be lymphoma. (He is fine now). Definitely kick up a fuss. It does not look normal.

update gp is concerned is going to email his paed and get him referred out to the children's hospital for a second opinion! Yay

Good! Hope they sort it out.