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

(47 Posts)
littlebunnyhophophop Thu 23-Mar-17 17:00:12

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 confused) she is now concerned as he's developed a mouth ulcer aswell sad

Slightlyperturbedowlagain Thu 23-Mar-17 17:11:48

I have no idea what it is, but it obviously isn't 'normal' and the weight loss could be a warning sign. I think you need to push hard and consistently for an answer/diagnosis and especially given the weight-loss ask for an urgent paed referral to a different paed department or consultant for a second opinion- a private referral should do it but you are entitled to a second opinion from the NHS. I really hope it isn't anything serious.

littlebunnyhophophop Thu 23-Mar-17 17:20:56

Thanks slightly , I think they must think I'm a neurotic mother but seriously I'm worried sick we just seem to be going round in circles with these doctors sad

FallenSky Thu 23-Mar-17 17:29:49

I'm not a medical expert in any way so could be talking rubbish. I was wondering if he's had a scan on it at all? Is it hard or moveable at all? I'm just wondering whether it could be a lymph node?

littlebunnyhophophop Thu 23-Mar-17 17:33:15

@FallenSky I thought and so did my own gp a lymph node he's had it xrayed but no scan

littlebunnyhophophop Thu 23-Mar-17 17:33:57

@FallenSky it's as if it's underneath the bone ifyswim it just feels like his collarbone to touch but it's obviously swollen

IfeelFloopy Thu 23-Mar-17 17:37:48

It looks like it could be a lymph node to me too. I'm sure you wouldn't anyway but do not let this lie as the symptoms sound worrying

Vegansnake Thu 23-Mar-17 17:39:14

No idea, but you must be worried.hope it all turns out ok for him xx

ittakes2 Thu 23-Mar-17 17:41:00

Have they done an autoimmune test? Unexplained fevers and mouth ulcers can be linked to autoimmune issues - not necessarily serious but at least you would know why they are happening. Sorry no thoughts on the swellings!

FallenSky Thu 23-Mar-17 17:42:07

I'm surprised that they've only done an x-ray. Purely because it's been there so long and as you say, it is quite obviously very swollen. I should imagine if it was injury it would have gone by now. I definitely think you're right to keep pushing this, especially with his other symptoms. Poor little guy.

The reason I said lymph node was because I've had similar swelling before, my lymph nodes seem to swell at the slightest sniffle. Mine was slightly movable and was sore though. I'm not sure if they show up on xrays, presume the Dr would have thought of that.

I really hope you get some answers soon flowers

Hastalapasta Thu 23-Mar-17 17:45:06

I am not a medic but it does look like swollen lymph nodes. This may help.
Is it tender when he touches it? Tbh the weight loss needs more investigation too.

littlebunnyhophophop Thu 23-Mar-17 17:45:07

We have spoken and we're sent to rheumatology months ago but they dishcharged us without even looking at the collarbone/bloods etc , my mother has lupus so that's been discussed before - we've been referred back to rheumatology because the paed thought it looked odd but didn't know anything really about joints/lymph nodes etc she's a neuro development paed (he has autism)

littlebunnyhophophop Thu 23-Mar-17 17:45:50

No it's not swollen or sore at all the doctor did ask that back in Jan he can move his arm etc freely and bounce about like there's nothing wrong sad

littlebunnyhophophop Thu 23-Mar-17 17:48:19

Won't let me open that link@Hastalapasta

Hastalapasta Thu 23-Mar-17 17:57:38

Try copying and pasting this:

It is a leaflet from the dermatologist association, tells you how to check lymph nodes.

littlebunnyhophophop Thu 23-Mar-17 18:05:01

Managed it thanks @Hastalapasta !

Slightlyperturbedowlagain Thu 23-Mar-17 19:14:02

Cancer is very rare in children, so it probably isn't but because it's rare it is easily overlooked and this delays diagnosis. 2 out of the 3 families I know who have been affected by childhood cancers have had to fight for a diagnosis.
Unexplained fevers, Weight loss and lumps/masses need thorough investigation to rule it out properly. This is a very useful website for information and to help you discuss it with doctors.

littlebunnyhophophop Thu 23-Mar-17 19:40:54

Thanks for that link @Slightlyperturbedowlagain that's what I'm worried about it just seems nobody takes me seriously 😒 I think because I'm young , but I'm going to push in the morning when the gp phoned for urgent tests none on this 'we will refer you to such and such' and then waiting 3 months for an appointment sad

Bluetrews25 Thu 23-Mar-17 20:01:02

Blood tests please. - worrying lump and sweats, plus weight loss is concerning.
Hope you get answers soon.
chocolate and cake for little one

Hardyloveit Thu 23-Mar-17 20:01:36

Agree about the cancer bit! My daughter had cancer aged two and had fevers and weight loss etc went to docs for nearly a year and they didn't do fuck all! ( she fell on a ball and went to a n e and got diagnosis, although went back a few times until they did!)

Don't want to scare you at all and it is very rare but I'm hoping they have ruled that out?

BrioLover Thu 23-Mar-17 20:08:16

Personally I'd take him to A&E the next time he has a fever. Sometimes it's the only way to get into the system without waiting months, and frankly with all the issues you've described I'd want to get checked out by someone other than a seemingly unconcerned GP angry

Screwinthetuna Thu 23-Mar-17 20:08:39

Hope it turns out something minor! Is he well in himself in terms of energy, etc?
Your doctor rubbish tbh and I'm shocked that's just been left without finding out exactly what it is.
I know you must be very worried but some things can look and seem very scary but turn out not to be flowers

Miniwookie Thu 23-Mar-17 20:11:00

I'm amazed that no one has thought that is worth scanning tbh. Keep pushing for answers OP. flowers

littlebunnyhophophop Thu 23-Mar-17 20:34:55

He's ok in terms of energy (as I said he is autistic and normally very hyperactive) but the nursery have phoned a few times to tell me he's fallen asleep in the middle of the day , he's quite pale , doesn't have a great appetite (but he has a good balanced diet , have been filling him with the likes of scrambled egg to up his weight ) I'm just pretty damn annoyed that nobody's done anything yet , I've got an awful feeling like there's something wrong but obviously I don't know what

crazyspaniellady Thu 23-Mar-17 20:36:24

I would keep pushing for more tests, swelling of the lymph nodes is never really anything good. What other symptoms does he have? I would like to stress I am NOT a medical professional, it just sounds like something I have done a lot of research on. Feel free to PM me if you want OP.

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