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!

Additional Diagnosis

Faith, March 2013

Much has transpired since the last time I posted anything on this blog. The biggest news is that at the tail end of January 2013, we were able to get Faith into see Dr. Harnsberger, a GI specialist at Primary Children's Hospital in Salt Lake City. Looking over all of the testing that has been performed on Faith over the last year, along with her current symptoms, Dr. Harnsberger has also added an additional Digestive Tract Paralysis (DTP) diseases diagnoses to the Gastroparesis. Faith also has Chronic Intestinal Pseudo-Obstruction (CIP) which prevent her intestines from working properly as well.  Dr. Harnsberger also changed Faith's DTP classification from idiopathic to post-surgical since Faith's symptoms definitely began after her appendix burst and the surgery for it. She strongly feels that it is the result of the infection from the burst appendix that permanently damaged her Vagus nerve and probably other nerves and muscles in her abdomen and pelvic areas as well.

The following is information on Faith's new diagnosis:

Chronic Intestinal Pseudo-Obstruction: A rare disorder of gastrointestinal (GI) motility where coordinated contractions in the intestinal tract become altered and inefficient. When this happens, nutritional requirements cannot be adequately met. In CIP, the intestines react as if there is a true mechanical obstruction or blockage, however, when testing is performed, no physical evidence of blockage is found.  Rather, the problem lies in how the muscles or nerves in the intestines work. In Faith's case, her CIP is neurogenic (arising from the nerves) in nature. For now, Faith is able to follow the Gastroparesis diet, though she has moved to two "meals" that consist of soft or liquid nutrition only.  

Chronic Intestinal Pseudo-Obstruction

Faith has lost nearly 30 pounds since her original diagnosis of Gastroparesis six months ago which means her nutritional absorption is low. I can also see this in her lack of energy. We have an appointment with Dr. Harnsberger  at the end of May (unless things take a dramatic turn for the worse). Hopefully her rate of weight loss will slow down before then, or she may end up on a feeding tube.