On Monday, Faith was feeling pretty well, so she decided to spend a couple of hours hanging out with friends. I was supportive of this since she has set a goal to try to return to school at least half time in the fall for her senior year. It is a good thing that her younger sister, Kira, was also included in the group, because while they were shopping as a group, Faith became extremely dizzy, she could feel her heart pounding, her vision went blurry, and then she fainted. She was only out for a few seconds, but during that time, Kira says she was unresponsive and she couldn't locate Faith's pulse. Faith has had four more serious dizzy spells since then, but thankfully she hasn't passed out with them. However, she has been extremely tired, sleeping upwards of 15 to 16 hours a day. Her pediatric GI ordered a EKG on Tuesday to see if these spells are heart related. We are still waiting for a cardiologist to read the results. I am not sure why it is taking so long to get this done. I talked to Faith's GI this morning, and she isn't sure why the cardiologist hasn't gotten around to reading it, though she isn't going to push to get the results. Faith has been on Erythromycin for about three weeks to help with motility in her small intestine. Neither Faith nor I see any real improvement in her symptoms or energy level, so we aren't sure how well (if at all) the Erythromycin is working. We do know that dizziness and fainting can be severe side effects of this medicine, but her GI insists that this isn't the case. Oh really? Check out this site:
I have to admit, I am getting pretty frustrated with the lack of knowledge in the medical community about my daughter's diseases. I am even more frustrated at the lack of real treatments available to her. It's like they are okay with watching her waste away. I know we agreed to try the Erythromycin simply because it is the lesser of the evils as far as medicines go. It really is time for Congress and the medical community to take a serious look at the challenges faced by people with Digestive Tract Paralysis Diseases and find ways to help them!
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