Please Help.

April 18, 2005

(I posted this Saturday night, but it never came thru)

Ive been a member off and on for the last 3 years, but recently there

have been some changes with my daughter. I am not sure how many of

you remember Emma (www.emmas2hearts.com) She is 3, almost 4, and is a

heart transplant patient with complex 1 and 3. (diagnosed after

transplant)

We have been doing amazingly well, no set backs whatsover. We almost

forgot that she was sick. Over the last 3 weeks things have changed.

It started with just behavior, we chalked it up to terrible 3's.

Then it turned into not sleeping, and now things have gotten really odd.

She doesnt sleep. She is going on about 3 hours of sleep a day. She

is also making repetitive sounds all night long, similar to what

tourrets patient do. Her speech has also become somewhat slurred, and

she has regressed to sucking her thumb and drooling (although not all

the time). Emma was a typical 3 year old up until this all started

less than a month ago.

We have met with her geneticist/mito doctor. He believes that she is

having seizures, we are trying to get in for an EEG next week. What

else could this be? It is like she has periods of the " old emma " and

then other times she is almost in a daze, just wondering around the

house. She has times where she is very verbal, then she has times

where she doesnt speak, or she repeats the same sounds over and over

(she laid in bed last night and repeated the same sequence of sounds

for 3 hours)

Any thoughts would be greatly appreciated. She is starting Ativan

tonight to help sleep, and hopefully the EEG will shine some light on

this, although I have heard that they dont always come out accurate.

Our next step is an MRI, but right now I am very concerned about the

changes I have seen in my little girl.

Thank you for reading this, any response would be greatly appreciated.

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