Dizziness and Fainting Spells

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: 

Drugs.com - Erythromycin Side Effects

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!

Roller Coaster Ride

In Memory of Haley Stonehocker . . .

It has been a while since I posted anything new to this blog. Quite a bit has happened in the last several days. First, Faith was diagnosed with a fungal infection about a week and a half ago. Her pediatrician told us then to expect her to get more infections now that she has gastroparesis. Seeing that Faith was diagnosed yesterday with an overgrowth of "bad" bacteria in her small intestines, I guess I will need to surrender to the fact that this is true.  I worry about the impact of two strong medications, Fluconazole for the fungal infection and Neomycin for the bacterial infection, on Faith's body, especially since they have been prescribed in such a short amount of time, but I just have to place my trust in the Lord that everything will be alright. I am trying to figure out why most of the medications they prescribe for people with gastroparesis carry the potential to actually leave the body more damaged than what it already is with the disease itself. For example, the Neomycin itself has the potential to cause kidney damage, nerve damage, or hearing loss. I constantly have to remind myself that the medications Faith is currently taking are meant to help her have a better quality of life. However, for a child who hates taking medication - she would honestly lock her jaws together as a child to avoid taking a fluoride tablet - taking her daily regiment of prescription strength acid reducers, nausea medication, pain medication, infection(s) medications, probiotics, and vitamins is somewhat torturous, especially as swallowing is sometimes impossible due to the pain. Thank goodness for chewable vitamins! 

A few days ago, we discovered a Facebook group for people in their teens and 20's who have been diagnosed with gastroparesis. It is called The Gutsy Teens Lounge. We learned about this group when our local TV news (KSL-TV) ran a story about a girl from Utah named Haley Stonehocker who just passed away from complications due to gastroparesis and another condition known as POTS (postural tachycardia syndrome.) Apparently research indicates that people with gastroparesis may be more prone to develop POTS because of the damage to the autonomic nervous system that comes with GP. Faith was deeply struck by the positive attitude demonstrated by Haley despite her illness, and she was touched by the stories shared by other young women who suffer from GP who spoke to the reporter. It was a great help for her to learn that there are a few other people out there who have idiopathic gastroparesis in the Rocky Mountain area. Since her diagnosis, Faith has been determined to live a happy, productive life despite having GP. Being a part of this special group will help her maintain this goal. This news story also led me to make the decision to sign up to volunteer with the G-PACT group to help spread awareness of gastroparesis and hopefully get more funding for research of this disease. Our thoughts and prayers go out to Haley's parents and family. Thank you for sharing your beautiful daughter's life and light with us. 

On a more positive note, Faith has managed to stay on a diet of solid foods for almost a month. While we realize that much of this is due to the fact that she limits what she eats at a meal to about a cup of food, but this is a real milestone as she used to throw up two or three times a week. We have decided to celebrate the small triumphs to help us stay focused on the positive. Life may be a roller coaster ride, but that doesn't mean that we can't learn to appreciate the thrill of living.