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maddisonella

New member
Honestly, just seems like more signs and 🚩 of MBP… changing the meds for no obvious reason, baiting others for info/directions and ignoring doctor/neuro guidance, waiting for the next catastrophic event so she can blame someone else and make Lu’s epilepsy all about herself for more attention 🤷🏻‍♀️ Probably still salty they were discharged home in time for easter. Needs more clicks!
I didn’t know what MBP stood for (now I do), but before you said that I thought to myself, gosh she reminds me of Sarah Paulson in the movie Run… very sad.
 
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EveryDaysASoulDay

VIP Member
I am truly lost for words but this sums up all of my thoughts exactly. She is such a toxic woman, I am glad Chrystal got out of that toxic household.
I just wonder how much longer will Dave put up with her shit.

There was this question, which seemed conspicuous to me. It could have been a genuine question from someone else or it could have been her asking herself the question and a window into her current thoughts. I’m sure she asks herself questions to have an excuse to talk about certain things or to be able to air her grievances. (I would bet at least one of those questions about Chrystal was from her.)
 

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Pollie

VIP Member
Maybe they wanted crystal to do tooo much to help with Tom too. I don’t know, seems so sad. Poor Lulu
 
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leeeeleeee

VIP Member
Let’s just say no one’s personal struggles are worse or better than anyone else’s as it’s not a competition. She can totally campaign for more funding, I’d do the same! Just coupled with her general attitude it rubs the wrong way I guess.

I hope she has a wonderful break, all carers deserve time to themselves (not just a few hours here and there) so I def don’t begrudge her this.
 
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santababy

Chatty Member

Thread 3!
 
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leeeeleeee

VIP Member
Call it White Knighting, I certainly have significant issues with the way Erin handles things BUT her going away and having a great time without mentioning Lu is totally fine and actually this page is about Lu, but also about her (often infuriating) journey as a carer I think. There might be carers of kids or adults who never ever get away or have time to themselves and maybe this will let them know how beneficial it is. Which is a good thing imo.
 
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RawlingsBlue

Chatty Member
Came here to say the same thing. All so not so for this age group and particularly if she has autism like I suspect. Most parents have at least one child who just doesn’t sleep well diagnosis or not.

Also why is she giving her sedatives every night especially if they “don’t touch the sides”. Some can actually have the opposite effect and make you more alert at night, but then sluggish through the day. She honestly makes no sense in some of the meds she gives to Lu and the ones she refuses too…along w vaccines.
Yeah trying to sedate your child 😵💫 does Lu need sedating?
 
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EveryDaysASoulDay

VIP Member
I think when Lu ended up having the MRI after Erin had finally decided to go ahead with the surgery, something about the results made the specialists change the recommendation did surgery. I think the ball is in the specialists’ court atm. (Assuming Erin reported that accurately, who knows.)
Correct me if I’m wrong but hadn’t she weened Lu off of the Epilim specifically in preparation for the surgery? Her suggestion that she should go back on it would almost certainly suggest that surgery is off the table now, would it not?
I wonder if her mentioning that she hasn’t been sharing much re: Lu’s condition lately and promising an update is going to be to announce that the surgery is no longer planned?
 

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jumble

Well-known member
I see comments like this all the time about Chrystal. She’s not a Manny she’s Lu’s carer (fairly certain she’s NDIS funded - someone correct me if I’m wrong). So she’s not there to care for Tom.
Ok well if she is NDIS funded (she wasn’t at the start) I still feel it’s wrong to not be at home comforting your own child.
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Erin’s stories make me so incredibly sad for Lu. Erin has never bothered to try and learn how to communicate with her. Showing Lu using a sign is incredible. She can communicate. You need to give her the tools to do so. And maybe Erin attend her speech therapy so you can learn as well.
Right?! It is so amazing that she has learned how to sign, I wish Erin gave her the credit she deserves.
 
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dulcielaroux

Active member
Interesting that Erin is doing What’s The Deep with Zoe Marshall - famed bestie of Rachel. Maybe things aren’t as acrimonious there?
 
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I follow a mum who’s three year old daughter has Dravet Syndrome, which is one of the most severe forms of epilepsy. And yet she is nothing like Erin. She gets on with things. She isn’t resentful. She celebrates her daughters achievements and doesn’t complain about all the things she/epilepsy “ruins”. And yet her daughter can hardly go outside because the overstimulation causes seizures so severe they could literally kill her. Erin could learn a few things from following her.
I follow her too… and she is incredible. She’s a single mum too (if it’s the same person)
 
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