Vague symptoms getting worse and Drs seem unconcerned

[makingmiracles]

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.

Has your daughter been screened for auto immune diseases?

My dad is 30 and all her life ( since she was born) she has had random symptoms which haven’t been ‘anything’ and then last year she ended up in hospital with a thyroid crisis - I suggested they test her for auto immune disease but I was shot down in flames - how would I know? Etc etc etc.

Eventually she got seen by a sympathetic doctor and he sent her for tests.

She has lupus

And how would I know? ......... I told them I was a qualified nurse who was doing her training when they were still in nappies.........

DD not dad!

Poisoning-not sure how that could be a possibility...she’s woken this morning saying legs feel week and the back of her neck hurts.
Lupus is something I considered too, how was that diagnosed in the end? Did her bloods show anything? When we go back on the 29th assuming nothing shows on her bloods next week, I’m going to ask for a printout of what they tested for so I can see for myself what they’ve excluded.

I don’t give her any multi vits at the moment, I didn’t want to do that in case it interfered with blood test results and potentially masked something else, I will talk to dr about giving her some at next appt.

So is the back pain in the right place to be kidney pain, or is it definitely her actual spine?

The main pain in in her central lower spine, the spine rather than either side of it. She has Had some tenderness on her right hand side/towards her back, which curiously is the side the renal caylx is dilated.

Random suggestion, but have you had your lead content in your water pipes tested?

We live in an old house and got it tested. It was 100 times over the safe limit 😢

I’ve always worried about the long term affect that could have had on DC, even when they were in the womb. Apparently (from memory) heavy metals don’t circulate in the blood. They get locked away in the bones and organs.

@makingmiracles my dd had antibodies tested and some came back positive and some negative but apparently that is common. They also looked at her symptoms and did a test on her eyes where they see how dry they are ( schirmers test) and they came back with hr having very dry eyes too.

It’s been a long process

We hadn’t lead pipes in our bathroom, but the bathroom and kitchen were ripped out and replaced a few years ago.
She is still not right, she keeps complaining she feels full too, this morning she took two bites of cereal and left the rest-totally out of character for her as she’s a ganet usually. I asked for bloods to be redone at Drs which they did yesterday evening as well as the ldh one that wasn’t done before, if I hear nothing from them we have another appt on 29th to discuss things.
I’m worried that they’ve obviously scanned her kidneys and bladder and mri the spine, but what if there’s something going in the intestinal regeign, that no ones picked up on??
My ndn child went in with wilms earlier in the yr, but she just kept getting told dr could feel poo and that her dd was constipated, wasn’t until her belly swelled up they started taking it more seriously and even then they did about 10 didfferent scans and tests to diagnose, worrying indeed as the pead said to me at dds appt that she could feel poo in dd bowel.
Dds also mentioned several times in the last week she she’s a bit woozy(dizzy? Hard to know what young children are describing sometimes) and that she’s found it hard to breath at points

I really hope you get news soon OP. She sounds so unwell! At least they’re doing investigations. Was the MRI whole torso? If it was perhaps you can ask them to go back and check it for issues other than the spine?

Unfortunately blueberry it was spine only so only shows length of spine and skull

So blood results are back from the other week, there are some slight abnormalities but unsure what they mean, if anything, so will have to wait till end of month till next appt to discuss with Gp

Serum alkaline phosphatase- elevated above normal range(double)
Serum LDH- elevated above normal range
Red blood cell count- below normal range
Phosphate- above normal range
Urine creatinine- below normal range
Large unstained cells- above normal range

Everything else seems fairly normal, albeit a couple of things that are showing as just about in the normal range-
Serum bilirubin
Haematocrit

Is right g Monday morning and ask if they can squeeze you in earlier as blood test results show unusual levels.
It's amazing how often appointments appear when they have things tangible to discuss!

Hope DD is doing ok this weekend?

Haven’t spoke to the Drs yet, trying to get my head round what the different results could mean, I’m fairly sure she’s verging on anaemia which would fi5 all the symptoms like the headaches and chest pains etc, haemaglobin is almost under normal range as is haemacrit (sp?) and red cell count is substantially under already.

Dd said she feels fed up of everything feeling wrong all the time

I’m compiling a list of questions to ask and things to talk about testing at the next appt next week