The complete disdain that she shows for Lulu’s medical team is astounding. Be angry at Epilepsy, not the people who have dedicated their professional lives to helping people like Lu.
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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.
Such an advocate and expert Erin.
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And another thought. No one likes doing EEGs. our kids hate them. We hate them. they’re horrid. But the information they can reveal is crucial. And there may be seizures happening, seems like she’s experiencing tonics at the moment? So it’s important to capture where they’re originating from. It’s also crucial to assess for new conditions such as DEESWAS which can speed up cognitive decline and is important to know so they can attempt to treat that set of particular seizures. I don’t recall her ever having the 3 day IV steroid treatment in the past? They haven’t tried everything. Treatments etc are constantly evolving too. It’s frustrating she is considering just saying no and potentially letting her suffer
Seizures aren’t just tonic clonic (grand mal) seizures. And she says about her being a guinea pig… to who? It’s all relevant, especially if there’s regressions. She just can’t be bothered. Which i do get. It’s tit. But you simply have to. Because not having all the information leaves you helpless and stuck in the same place when there MAY be new information. I feel so sad for Lu that she’s suffering at the moment
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One thing really stood out to me in that rant… that she mentioned how hard the EEGs are on THEM, and then as an afterthought mentioned how hard they would be on Lulu.
Also, the dig that the new appointment, the appointment that was moved forward to assess Lulu sooner, is no longer an in person appointment, but a Telehealth appointment. Yeah, because most people have to wait months to see a specialist, you’re sick, Erin, so why would you want an in person appt., and you yourself said the doctor brought it forward (essentially squeezing you in). Maybe a Telehealth is all they had time for. If they’re running late you’ll be waiting in the comfort of your own home. Go for your run before the appt time and work around that, rather than expecting everyone to work around you, you selfish beast.
Also, the dig that the new appointment, the appointment that was moved forward to assess Lulu sooner, is no longer an in person appointment, but a Telehealth appointment. Yeah, because most people have to wait months to see a specialist, you’re sick, Erin, so why would you want an in person appt., and you yourself said the doctor brought it forward (essentially squeezing you in). Maybe a Telehealth is all they had time for. If they’re running late you’ll be waiting in the comfort of your own home. Go for your run before the appt time and work around that, rather than expecting everyone to work around you, you selfish beast.
So 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.
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 tit together while being continuously recorded either. We only see the highly restrained version of her on her stories
You cannot leave the hospital (or home if doing in home testing) or be out of sight of the cameras during them.With a sudden reappearance and frequency of seizures, that’s the first step is to determine what they are, where they’re coming from, how far they’re spreading, how long they’re lasting, etc. She’ll use the content, but not investigate any further.
I’m sorry - has she not just been posting about her friend’s child dying but when her own child’s condition worsens she doesn’t want to bother to try to figure out why? Why is this not alarming to her? She doesn’t see the necessity in the testing?? It doesn’t make her pause to think that whatever is happening could be life threatening to her own little girl? She even follows up her rant with another post about the little girl who passed. I tell you what, if that just happened in my circle, I would be hyper-vigilant with my own child’s care, not complaining because the doctors want to help her. bleeping mind boggling.
If you don’t understand why the testing is necessary, HAVE THAT CONVERSATION WITH THE DOCTOR and ask them! You get no clarity bitching about it to strangers, you petulant little b*tch. Honestly she’s so insufferable.
If you don’t understand why the testing is necessary, HAVE THAT CONVERSATION WITH THE DOCTOR and ask them! You get no clarity bitching about it to strangers, you petulant little b*tch. Honestly she’s so insufferable.
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.
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.
You just want to take her by the shoulders and shake the tit out of her, don’t you?
This face she makes as she begins discussing setting up a GFM for the family who just lost their daughter. Everything is always about her and the head pats she can get from whatever she’s doing - this face is all about her glee at being the one to set up the GFM and the family’s spokesperson. Then she remembers she’s talking about the death of a child and gets somber. But throws in that the family may decide to use the GFM to go on a holiday. The audacity of her to even mention a GFM, let alone run one for someone else, is astounding. Also, this story from last night seems pointed.
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I mucked up and called the next thread #3 when it’s actually #4 soz tattlers! I’ll see if anyone knows how to fix it - otherwise here’s the link
Erin - Little.Lulu.love #4
Carry on tattlers! Also yes this is meant to be #4 but I mucked up 😂😂😩😩
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