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Vague symptoms getting worse and Drs seem unconcerned(39 Posts)
Ok so I posted on here a few months ago about my daughters back pain, on seeing the Gp they did a urine test which showed blood in her urine, that then triggered a fast track ultrasound scan on her kidneys and bladder, nothing was found apart from her tubes into her kidneys are enlarged but with no apparent reason. Bloods all came back normal. She had an mri, which showed no reason for the back pain. A repeat ultrasound was done 6 weeks after the first, calyces still dilated, no other change. Follow up by paed and she was completely unconcerned, despite my dd still complaining of back pain, by that point also complaining of tummy pains round and below navel and blurred vision now and then, noticed she kept being Clumbsy and dropping things and falling over too. Pead deduces that given length of time back pain been present it’s obviously nothing sinister, says dd has a sensitive back(!?)
By now the back pain has been present for about 12 months.
After pead appt beginning of Oct I decided to start a diary and write down things dd complains about And this month all of a sudden she is complaining about a multitude of things, chest pain, to the left under her nipple area(accompanied by irregular/racing heartbeat, nausea and tingling in her hands) after the second incident I called the dr who had her down surgery for an ecg-they hooked her up for about a minute and printed off the results-is that even long enough to tell them If there’s anything wrong? sternum chest pain, pains in joints-her thumb, her heel, blurred vision again numerous times(took to optician to rule out any eye problems, sight is perfect) she seems to have a mouth sore/ulcer that has been there over 2months and recurrent Candida, which despite treating with cream doesn’t really seem to go away.
She seems ok in herself despite the aches and pains and the only difference I’ve noticed in her is she’s needing to go to bed earlier and I’m having to wake her in the mornings which I’ve never done before as she’s normally the first awake.
I’ve got a Drs appt but not till end of Nov as our Drs are rubbish and you have to wait weeks for an appt.
I don’t know if I’m being paranoid of if there’s something really wrong and no ones picked up on it, I’ve hardly ever taken her to the Drs in her life so it’s not like I’m a neurotic mother or have health anxiety.
I read some research online that looked at leukemia children that presented with bone pain as a symptom and their blood counts were all normal, the only thing elevated was a test called an ldh, which I’m obviously going to now ask if she had that done, and if not, push for that to be done and a repeat of all bloods done back 4 months ago.
Paed not due to see her again till April next yr.
ME can affect eye sight too as well as generalised aches and fatigue
No idea about the celiacs,hopefully find out exactly which bloods she had done either before or at next appt with Gp.
Tonight she came home very irritable which is very unlike her, was ok most of the evening but after going to bed came back to say she felt weird and like there was something in her throat and that her tummy hurt again, I sent her back to bed with a sick bowl and she hasn’t reappeared. Interestingly I’ve just been reading up on anemia and a lot of her symptoms seem to colerate with that so wonder if she’s a bit anaemic, she looks a little pain compared to normal, she usually has quite tanned looking skin including face so will be good to get bloods retested to see if she is or not.
Don’t know much about ME but will have a look into that.
Hmm, have just had a look at CFS/ME and symptoms are very similar to what she experiencing, another one to add to my list of differential diagnosis
How old is she?
My ds had been 'not right' for many years but never complained of pain or symptoms. (He has asd so can't really).
His signs and symptoms are being investigated now but there's a lot of 'now mini youare has.....' it's making it hard because I'm saying 'always had .....'
My advice would be to worry down a diary of symptoms and complaints from the beginning on top of your monthly diary.
Ring the pead secretary and say DD is experiencing worsening symptoms and want a call from pead. Say that just because they can't explain something doesn't mean there's nothing to explain. Ask them what they tested and ask them to test for the other things next.
Yes I was planning on shortlisting everything she’s mentioned with how many times she’s mentioned each symptom next to it.
I rang the pead yesterday and was told she would call sometime this week as she was busy in clinic but if I haven’t heard by end of tomorrow I was going to chase it up thurs morning, my Gp is meant to be ringing on a booked telephone appt Thursday too.
I’m just so sure something is going on with dd, I just don’t know exactly what, she never used to be a complainer at all, always had very good health and rarely Ill but the back pain in the past yr she’s complained of and that has increased massively, it used to be every few days or so, now it’s several times a day along with all the other random symptoms too, it makes me sad that she’s got back pain at 7 and when she gets out of bed in the morning it’s the first thing she says,
...ow my back hurts there’s absolutely no reason for her to have back pain since she’s never carried a backpack up till this sept(but even now only contains pencil case, reading book and her lunchbox) I thought it was her mattress at first so I bought a new one, but that didn’t help either.
I think it sounds potentially serious OP, though fuck knows what’s wrong with her. all I’d say is, if you’re not getting to see doctors by the normal route, don’t be shy about using A&E if she has another bad episode, especially with heart palpitations. After all, what other options are they providing? None!
Make sure she tested for coeliac.
Ask to go back to paed.
What does school say ?
You are your DD’s advocate. If your gut instinct is telling you that something is wrong then fight fight fight. Get to the bottom of this, do not be fobbed off.
My DD (12) has had years of unexplained pain, tiredness & fatigue, stomach pains and vision symptoms. Paeds are saying they think it may be migraines. I actually wonder if it is candida overgrowth or food intolerance.
Might be worth reading about?
Sorry to hear your DD is going through this - it's grim. I feel as if so much of my DD's childhood has been snatched away. It really impacts on every part of her life - hobbies, socialising etc.
Well she’s woken up this morning clutching her chest in the sternum area saying It hurts, then during breakfast she said she can taste metal in her mouth
It might not be the best advice but I’d probably take her to a&e with the chest pains if they’ve worsened this morning and try and insist on scans and bloods. Your poor DD, no kid should have to feel rubbish all the time
Oh poor thing! Do you have a walk in doctors at all?
I think you're just going to have to be a right pest, for the sake of finding out what is wrong with her.
Fwiw, anaemia is a common side effect of undiagnosed coeliac disease. Does she have bowel issues?
No, no bowel issues whatsoever, I suppose that’s why I didn’t consider coeliac as my close friend has it and if she’s not careful about what she eats she’s in agony with stomach cramps and on the toilet for hours after.
I looked up up nose this morning as she said her nasal septum hurt again this morning(last time it was mentioned, going bk through diary was 30th Oct) And there is a lump inside her nostril, I’ve had lumps like that before like a spot thing in my nose but not sure whether I should be more concerned or not given she first complained of it hurting was 9 days ago??
Wondering if the metallic taste might be an anaemic thing
I’ve rung Drs again and a duty dr will be ringing me this afternoon and possibly see her down the surgery later, so that’s good.
A metallic taste in the mouth is a common side effect of lots of medications.
Did you get seen today?
Seems there are some medical conditions which cause a metallic taste too:
Zinc deficiency is listed. It can also cause mouth ulcers
Right I’m feeling a lot better since seeing the dr, as a stroke of luck duty dr happened to be the same one who originally refferred her fast track for the kidney and bladder scan. She was very understanding of my concerns (my bf died suddenly of undiscovered cancer and recently my dd friend, who used to be at my house every day also went in to hospital as she has kidney cancer,neither seemed particularly unwell until just before they went into hospital, my bf was dead within a week of finding out, dd friend is still having treatment) dr said she’d recently had a child patient with kidney cancer so I’m relieved as cancer will be something that will be at the forefront of her mind throughout.
They checked most things at last bloods I think, dr said inflammatory markers came bk negative but the test I looked up, LDH was not done so she is putting that one on this time too, dd will have to go back after the weekend to have the bloods done. Feel a lot better knowing they are checking everything again!
This might sound really stupid, but if she is using a trampoline that can cause peculiar back and chest pains because certain muscles are being over used in spurts.
Also, could a factor be excess stomach acid, that may also cause back pain (upper back between shoulder blades) when the stomach is empty. And acid in the throat at night can give a funny taste and a feeling of something stuck in the throat...hope you get some reassurance from the docs this time.
No, no trampoline. Doesn’t do any sports other than pe at school, but complains that when she runs her back starts hurting. Her back pain is lumbar pain, only once has she ever complained about pain higher up.
Hopefully next lot of bloods might give some sort of clue as to what’s going on. She has massive eye bags too at the moment.
Chronic poisoning of some sort (eg Mercury) would explain all the symptoms...sounds v unlikely though!
Hello - the pennies thing I used to get a lot I have enlarged adenoids and have had tonsils /adenoids out as a kid.
Her aches/pain's do u give her any kind of vitamin supplement? B vitamins and iron.
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