Over the interpretation of blood tests?

[MyOtherCarIsAPorsche]

A blood test result taken last night has shown a level which is concerning.

So hospital want another blood sample the next day. So they get a better result for themselves so they don't have to take action?

Why?

Don't they believe their own blood tests?

The result today was exactly the same as yesterday's.

So who wasted whose time and resources?

So the difference made in 12 hrs was zero.

Hmmm.

Which now shows that it is likely a real result that warrants treatment, not a false positive or some sort of error! Why can you not see this?

It shows the first test wasn't an anomaly. And LOTS can change in 12 hours.

You aren't a clinician, and obviously have no understanding. No one will be doing this for fun I promise you.

Calling a required blood test ‘trauma’ is ridiculous… if he goes untreated it will undoubtedly be more traumatic.

If he has random nose bleeds (indicating a lack of appropriate clotting) but the blood samples clot immediately then no wonder they wanted to do them over - the symptoms don’t match the test results!

Epilepsy is very difficult to diagnose (not always an obvious cause for the seizures) and difficult to
medicate, unfortunately. Lots of trial and error with drug titration etc.

I expect they want the consultant neurologist to have a look at the results before deciding what to do next, you might get a referral for a second consultant (eg my DD’s main doctor is haemotology/oncology but she also sees the immunology consultant as it’s a complex condition that doesn’t quite fit anywhere).

Also, look up coagulation disturbance and anti-epilepsy medication. There's every reason for them to be concerned and to want to be absolutely confident that the results of any tests are telling them what they need to know, before possibly having to discotinue a medication that might help someone.
Yes, tests are stressful for children, but missing something, making wrong treatment options and misdiagnosing are even worse.
As others have said, getting the right AEDs for someone, while minimising side-effects, especially in younger children, is really difficult, and being certain of what's going on while doing so is absolutely vital.
No clinician will be ordering unnecessary testa for the hell of it, to avoid work or to upset a child.

He has a high coagulation rate - the time taken for blood to clot is longer than normal. His blood isn't clotting as quickly it should be. His blood does not clot immediately - it is the opposite.

Not a high coagulation level.

It must be a timed test.

He's had nosebleeds for about 10 days or so and he's still dripping blood from his nose.

Hospital have since rung and confirmed that recent video footage of him is a new form of epilepsy and to discontinue his second drug and continue with the first (which he was supposed to discontinue). He will be discussed at next week's meeting.

He's been on epilepsy drugs since the beginning of last November. They have either made him worse or he has become worse as he gets older. He has had seizures since birth - which they told us were breath holding.

He will be having frequent blood tests in the meantime.

Basically, then, your GS was having some concerning symptoms, so the hospital spent time, effort and money doing a lot of tests (as they should), and one came out with unexpected result. They even did the test again on the same sample, so they could find out if the first test got cocked up somehow without having to take more blood — but it came out with the same result.

So in order to be sure that they'd detected a real and persisting medical issue, they needed to take another sample and check it (and maybe take blood for another, different selection of tests, extra ones that they do if the test that your GS had an unexpected result for comes back showing a problem).

Maybe if it were a minutes-matter emergency, they might not have. Maybe if nothing could've possibly changed over time, they might not have. Maybe if follow-up tests weren't needed they might not have. Maybe if treatment for the problem was completely harmless, they might not have. Maybe if they already knew exactly what was going on, they might not have. Maybe if blood testing was always perfect, they might not have.

But testing isn't perfect, medical situations can evolve and develop, there was time to do another sample, they did seemingly need to do more tests, the situation might have changed, medical situations can be confusing and unclear, and treatment isn't harmless.

I think your grandson is worth the extra time, effort and cost involved in properly investigating the problem. Maybe you would prefer they didn't bother, but thankfully it's not up to you.

But you’re clearly convinced that you’re right and don’t seem to be listening to the many explanations of PP’s. are you interested in opposing opinions or simply want to have yours confirmed?

I do hope this thread brings you some comfort in an obviously extremely difficult situation. And I wish your grandson all the best.

Adverse side effects of the new drug were reported last Thursday.

It has taken a week to decide to stop the drug.

He was on the drug for two weeks. One week of it was unnecessary.

Can't be sure from what you've shared, but that could indicate that they're concerned the new meds are maybe the reason for the coagulation issues, which is why they've stopped them - and if so why they wanted to repeat the tests before doing so - especially as the original meds are not helping.

Not all adverse effects are severe enough or permanent enough to mean someone needs to stop taking the meds, I'd suggest that severe coagulation issues were the tipping point in that regard

Yes YABU.. they're trying to treat him correctly fgs. Stop making wild accusations

He has a blood clotting disorder and it's clear his blood isn't clotting normally in order to still be bleeding as it is and you're so worried about your grandchild's trauma and making up motives from the clinical staff rather than supporting them doing every available test to ensure correct diagnosis and subsequently, treatment. It's baffling.

You're not just a nana. You're a woman making shit up as someone else said.

Yeah, see you’re absolutely the sort of person who has no business being anywhere near doctors/hospitals when there is emotion involved.

You are unable to think or see clearly, use any reason or knowledge. You’re just embarrassingly ignorant.

You just need to stay away and be grateful.

And I hope you're not winding up the poor parents of this child with your irrational conspiracy theories.

Would you prefer the child start treatment without rechecking a coagulated blood sample?

Medicine is not 100% perfection.

You sound like a very unpleasant person.

What is your profession?

We’re all experts now. Patient Knows Best.

Agree, 'just a nana' indeed ....🤨

If the first test results were unexpected they had to be sure it was correct. The next lot of tests confirmed the first one was in fact correct.
You are very obviously and understandably stressed and upset. It can’t be nice knowing your little grandson is scared and upset. I really feel for you and hope you get the answers you need very soon. 💐

This sounds extremely frightening and I hope it gets sorted out for the little lad very soon.

It is so so important to do enough tests before changing treatment when a child is so unwell. I hope you can see that and trust that the HCP have gc's best interests at heart.

I understand that you're worried & concerned for your grandson. It doesn't sound like your concerns have been taken seriously & now it feels like this second blood test has been a waste of time & trauma for your grandson. However its absolutely necessary to ensure the results are correct or remain unchanged before deciding a course of treatment. I think the 2 issues are separate: the blood tests were absolutely necessary (and expensive!) So you must put your feelings about that aside. The other issue of your daughters concerns not being taken seriously enough are a worry and hopefully she hears from the epilepsy team soon to make a plan. I wish you all well.

Think of it this way. Finding that the result was accurate meant that he needed, by your account, a further 10 vials of blood taken, for further tests. Which in a struggling 3 year old would often take multiple needles. Should they really have done that without checking he actually needed it? You also queried how much blood they had taken from him. I'm assuming clotting bottles, which in paediatrics are usually 1.2 ml. So 12 of those would be 14.4ml. Less than a tablespoon. It'd difficult to take from small veins, but it is not the sort of amount that he'd miss.

YABU

How can you be so determined to see malice in the doctors wanting to ensure their initial blood test wasn't an anomaly, rather than the logical assumption most people would make that they were doing it to check the results were correct?

Either their initial test was correct and therefore they have two consistent tests that allows them to determine which treatment to do or the tests provide different results which again will determine which further treatment is most appropriate, depending on the diagnostic context of the results.

I had surgery last year, at my preop I had some routine tests (BP/height/weight/ECG/blood oxygen levels/urine test etc) done which were all normal during the appointment along with having blood taken to be sent to their lab for routine testing.

4hrs later I got a call from the hospital to say my blood test had flagged as me having dangerously low iron levels, but the level shown in my test was inconsistent with my presentation as they said they had only seen such low levels in people barely conscious who were very obviously unwell. Because the result was so inconsistent from the evidence they had in front of them in the form of my presentation at the appointment and the normal results of the other tests they asked me to get a second blood test to double check, with the assumption that the initial test had been corrupted somehow (not stored properly, there was a mix up, there was something in the tube that affected the sample etc) and that the new test would show the "correct" result.

The following day I had the second test at 10am and by lunch time I had been called by the path lab at the hospital, telling me to come to hospital immediately (and if I couldn't get there myself then they would send an ambulance for me) because the initial test was correct and my iron was so low I was at risk of my organs shutting down at any time, and I needed an immediate emergency transfusion.

They could have done the infusion immediately after that first test but with the evidence they had the balance of probability was that there was a problem with the sample so they did a second one to check. 99 times out of 100 the second test would have come back "normal" and would have required no treatment and treating the "anomaly" without question or confirmation would actually have done more harm; I just happened to be the 1 in 100 where the original test was correct and treatment was required.

Just wanted to say please do get some emla cream. Definitely worth it- managed to do a blood test on my 2yo whilst he was asleep. It’s amazing stuff. Needs to go on an hour before and be wrapped in cling film so it doesn’t rub off.