Just don't know what is happening to my 2 year old with PDCD!

[Guest guest]

Our Ellie, 2 1/2, was just diagnosed about a month ago from a muscle

biopsy. Ironically, in the recent months she has been getting much

weaker. Now in the last week, she has been screaming every night

when she goes to bed, wakes up and screams, sometimes cries in her

sleep. She has had 3 days where she has just screamed and cried for

half the day, she seems to be in pain, but she gets non-verbal when

she's like that. Sometimes I think she is just being two, because

she seems to be able to stop for a while or seems to be milking it,

but then she will really seem to be in pain a few seconds later.

Today after I managed to get some bacon in her for lunch she was able

to talk a little clearer, well talk at all I should say, and she

wanted to go to bed and she said her fingers hurt. She has been

taking it real easy the last couple of days so this time it doesn't

seem linked to too much activity. Does this sound like she is in

crisis? She is not sleeping well at all. But, she does get better

for half the day, so I just don't get it. But, it's like she is some

other person, she is normally so happy and easy going. She used to

do this when she was much younger, but it didn't last for hours, it

was like attacks that came and went. Any possible explanations?

Thank you,

L