The funny thing is if they didn’t want to do any tests, she’d be complaining they are not doing anything and have given up on Lu. The doctors can’t win with her. Doesnt she realise that if they could have more people doing sleep study eeg at home it would free up the hospital system and beds. There is clearly a reason why they don’t have that happening but she cannot think outside of her own box and needs. It’s all about what inconveniences her, not this pretend care about Lu being a Guinea pig.Her whole ‘why does the neurologist want to do more tests’ is crazy.
if Lu’s had no seizures for over 12 months, and is now having them again, of course they want to run some tests!Lu’s not being treated as a guinea pig, they’re trying to understand what’s happening
Haha. Another proof of how out of touch Erin is. There are “at home testing” continuous recording EEG with video recording available. We did it not even 6 months ago. You head in, get kitted up, take the equipment home, and stay home for the duration (1/3/7 days). Lol. I’m not posting the name on purpose, she needs to look into it. Just more proof she does not listen to their neuros. Ours organised it for us.Don’t forget she’s complaining that it’s 2024 and no-one has invented a way for them to have a camera recorded eeg at home.
Now Erin, I’m no neurologist but the reason you wouldn’t be able to do those camera recorded eeg’s at home would be because there are so many inconsistencies in the environment ect
She of all people should be clear of the intent. They’re to determine where seizure activity is originating from, spreading to, what kind of seizures they are, what her background waves are doing, what her brainwaves are doing during sleep, what has changed, what particular meds could be changed to target whatever the eeg is showing… They’re not done for fun, they’re done for a multitude of reasons- these are things she of all people know, she just doesn’t want to do them. I suspect it comes down to the fact she would have to spend more than a solid 24 hours with her without palming her off to a carer or night nurse. And i don’t think by her mental state she could keep her shit together while being continuously recorded either. We only see the highly restrained version of her on her storiesSo I think I get where she’s coming from, I wouldn’t want tests to be done on my child unless I was clear on what the intent was. But I just wonder why it’s not clear, like surely that could come from a conversation with the specialist? Maybe it’s not that easy. But I’d be asking what did they hope to learn from the tests, what are the hypothesis, what will be done with the learnings.
You just want to take her by the shoulders and shake the shit out of her, don’t you?Each time I think she can't possibly be more selfish, idiotic and actually stupid, she proves me wrong. I honestly don't understand how she can equate the neurologist wanting an updated EEG (which is, yes, annoying, but in the grand scheme of medical testing pretty non-invasive - I mean, it's not like they're wanting a lumbar puncture or bone marrow aspirate!) with them treating Lu like a guinea pig? Erin, they want data to inform treatment options FOR LUELLA. Just because you have given up on your daughter doesn't mean the medical professionals have.
She says that every EEG is worse, and nothing ever changes --- can someone smarter than me please make that make sense!? Poor, sweet Luella. He mum basically cannot be bothered any more. First she messes up Lu's only real chance of ever experiencing some seizure freedom by kicking the can down the road until surgery is no longer an option....and now she's basically refusing to do anything more because 'nothing will work, because nothing has ever worked, doctors don't know anything, they are treating Lu like a guinea pig' etc etc etc.
Treating Lu like a guinea pig would look like doing invasive testing that will not benefit Luella, but will benefit the greater good. The results of a simple video EEG will only be of any benefit to Lu. I don't know, I guess I'm just stuck on where this guinea pig nonsense came from? Like someone mentioned above, either the doctors do nothing, and she'll rage about how they have given up on Lu and don't care and are punishing Erin. Or the doctors squeeze Lu in and order a barrage of tests to hopefully get some new information that will result in new treatment options to improve Lu's quality of life, and Erin accuses them of treating Lu like a guinea pig. Like, what? I just can't make sense of this woman's brain.
We use cookies and similar technologies for the following purposes:
Do you accept cookies and these technologies?
We use cookies and similar technologies for the following purposes:
Do you accept cookies and these technologies?