Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Hi, I have been reading for a few days and have responded to a few posts, so I figured I should introduce myself: I am , I'll go by J, since I am sure there is more than one . I have two kids, who is 15, he for sure has a mito of some kind, he had a muscle bio done at Children's hospital in Seattle, we live just east of Spokane, WA in Idaho, so now they have the results and have referred us to DR Santeo for him to evaluate and treat him, all the doctor told me was the results were abnormal, and he knew basically nothing but that DR S did, and he would refer us to him, so on Thursday we will make the trip (300 miles) to see what he has to say, so after 15 years we may finally have an actual name! The MDA doctor we saw after the muscle bio said he has a mito but she didn't know which one. has a lot of issues, muscles, chewing food, gastro, immune, asthma, ears, sinus, seizures, developmental delays, walking (we finally got an order for a chair), depression, mild acting out, I am sure I forgot something. has pretty much had issues in every system in his body at some point, he has had different things fixed, removed or put in the right place, for a total of 8 surgeries. Then I have my sweet baby girl, the baby nobody ever thought we would have, our precious miracle, Mirella. She and I both had a rough 37 weeks during the pregnancy, long story, but to sum it up, we both could have died. She is almost 4 months. We don't know her status yet, she is being watched closely, I tend to think at this point she is mildly effected (she has feeding issues, gaining weight, and is a very sleepy baby) but she is starting to make her milestones (grasping toys ect, trying to roll over) My son was much sicker at her age. I don't know how much I'll post, I tend to post if I feel I have info someone might use. I am curious though has anyone else used Children's hospital in Seattle with DR Santeo? J, Mom to 15, mito unknown, Mirella, 3 months, status unknown (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
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