Re: Re: Chelsea's genetic appt / increased seizures again/ Geri Anne

[Guest guest]

Geri-Anne

Thanks so much for the info! When I mentioned that to Jeff, he said "oh yeah, I remember the neuro mentioning that at our last appt". And then I did too. Trouble falling asleep is also a symptom of Rett Syndrome, because of immature basal ganglia function. The girls have trouble calming themselves to sleep. SHe has been having this issue since she was weaned off phenobarb in Aug. It got better after a few months, but picked up again when her Lamictal reached it's max dose, so it must be playing a part. Her neuro actually increased her nitetime dose to 100mg, as she is having a majority of her activity at nitetime and while sleeping. They have stopped, thanks goodness, but she has been sleeping since 7pm thurs, with brief waking periods (after being awake since 1am thurs after sleeping only 2 hrs!). She was full of it all morning this morning, but passed out a 1pm and hasn't woken, even thru a neb and chest PT! I guess she is just catching up.

I hope Wyatt's seizures get better as well=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Geri-Anne

Thanks so much for the info! When I mentioned that to Jeff, he said "oh yeah, I remember the neuro mentioning that at our last appt". And then I did too. Trouble falling asleep is also a symptom of Rett Syndrome, because of immature basal ganglia function. The girls have trouble calming themselves to sleep. SHe has been having this issue since she was weaned off phenobarb in Aug. It got better after a few months, but picked up again when her Lamictal reached it's max dose, so it must be playing a part. Her neuro actually increased her nitetime dose to 100mg, as she is having a majority of her activity at nitetime and while sleeping. They have stopped, thanks goodness, but she has been sleeping since 7pm thurs, with brief waking periods (after being awake since 1am thurs after sleeping only 2 hrs!). She was full of it all morning this morning, but passed out a 1pm and hasn't woken, even thru a neb and chest PT! I guess she is just catching up.

I hope Wyatt's seizures get better as well=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)