I thought she did respond to medication? Didn’t she say last month she only had 1 seizure since January when she previously had 100s a day (unless she was grossly over exaggerating )
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Yeah she said she’d responded to ACTH which SCH wouldn’t give her but eventually did because “she was right”
Yeah and the epilem one too right? She’s said lately she hasn’t had a seizure in a long time because of whatever combo they were on and she was worried about having to stop using whatever it was ahead of surgery?
Yes it seemed like they reduced down to nothing on whatever combo she is on. So seems like Lu isn’t medication resistant. The more videos she shows of Lu at the moment the flapping of the arms etc I think it’s autism that’s affecting Lu more than the seizures at the moment. But it’s so nice to see her beautiful happy little face. She is a gorgeous little girl.
Does Erin not realise that Lu probably has some other diagnoses going on? Probably autism of some kind. These diagnoses can affect sleep. It’s also very normal of children this age to wake up multiple times a night.
I wish I could get a night nurse for my kids who are up through the night
I wish I could get a night nurse for my kids who are up through the night
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.Does Erin not realise that Lu probably has some other diagnoses going on? Probably autism of some kind. These diagnoses can affect sleep. It’s also very normal of children this age to wake up multiple times a night.
I wish I could get a night nurse for my kids who are up through the night
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.
does Lu need sedating?
LOL. Baulking at $85 for a sleep suit when your daughter is having extremely fractured sleep. If it was me and I thought it would help, I would pay ten times that.Erin - instead of googling can anyone recommend a 4+ sleep suit
Everyone - recommends one
Erin - oh, well something cheaper
I think she's mentioning the price in hopes some company will gift her one or two. It's not like they're hurting for cash.
What's with the "just to clarify in case anyone thinks we've only been struggling with this for one month, when in fact we always have, because thanks epilepsy". First of all, once again making sure everyone knows her struggles. She can't have anyone operating under the misconception that she hasn't been struggling forever. She must reiterate that it's ALWAYS terrible. Just for Erin, not Lu, she's the one causing all the problems for the fun of it, or so her loving mother seems to believe.
Second, why is she assuming epilepsy is responsible for the sleep problems? People can have more than one diagnosis. Epilepsy has plenty of comorbidities
What's with the "just to clarify in case anyone thinks we've only been struggling with this for one month, when in fact we always have, because thanks epilepsy". First of all, once again making sure everyone knows her struggles. She can't have anyone operating under the misconception that she hasn't been struggling forever. She must reiterate that it's ALWAYS terrible. Just for Erin, not Lu, she's the one causing all the problems for the fun of it, or so her loving mother seems to believe.
Second, why is she assuming epilepsy is responsible for the sleep problems? People can have more than one diagnosis. Epilepsy has plenty of comorbidities
I have had sleep issues w the grief I experienced and sedatives are only meant to be used for a short period. She sedates Lu every night by the sounds of it ??
The sleepsuit is a hell of a lot cheaper than a night nurse. Would be $400 a night minimum I would say.
The sleepsuit is a hell of a lot cheaper than a night nurse. Would be $400 a night minimum I would say.
The sleep suit is also cheaper than a date night too, just saying...
And did you see where she is getting her bathroom fit out from ? Very very high end
I just don’t know how you can claim $85 is too much to spend to give your daughter some relief and desperately needed rest and in the next breath brag about picking finishes for the luxury home you’re building??? She is too much.
No epilepsy here and my children all woke 10+++ times a night until between ages 2.5 years and 3.5 years. All the specialists appointments under the sun and nothing medical. Sometimes kids just wake or are cold or hungry or out of habit, not just epilepsy 
When she’s not even willing to throw down $85 it sure makes the whole “Dave and I are at our wit’s end from years of sleep deprivation” ring a little hollow, hey? Good grief
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Pretty sure $85 wouldn't even touch the sides of your wallet, Erin
Haha yep my toddler doesn’t slee well at al. Sleep suit did nothingHeck I threw $85 away yesterday buying a 3.5 sleep sack hoping that would fix our sleep…
Nope
My eldest is 7 and still rarely sleeps through. My middle child still wakes frequently. And then I have a baby. Some of us are just lucky like that 
It’s pretty normal to have kids a couple of years apart and end up with very long stretches of broken sleep. Of course I’m sleep deprived, but I’ve just adapted.
If she’s not waking up overnight having seizures, how is epilepsy to blame? Erin really just is so negative. If I was in her position, Lulu would
be sleeping in my bed with me. We’d both get more sleep that way.
It’s pretty normal to have kids a couple of years apart and end up with very long stretches of broken sleep. Of course I’m sleep deprived, but I’ve just adapted.
If she’s not waking up overnight having seizures, how is epilepsy to blame? Erin really just is so negative. If I was in her position, Lulu would
be sleeping in my bed with me. We’d both get more sleep that way.- Status