Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hey Suzanne Emma was taking 5 pills of melatonin and it wasnt touching her, so we had to go with prescriptions. Im waiting for her Geneticist to call me back now... I was also wondering about strokes, but wanted to hear what you guys thought about her symptoms. Thanks! Please Help. > > > > (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. > > > www.emmas2hearts.com > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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