Dysautonomia

I can't believe that I haven't written anything since March . . . My only defense is that Faith has been struggling with more health issues. A visit to a cardiologist in April has led to an additional diagnosis of Dysautonomia (Autonomic Neuropathy) as well as discovering that Faith has a hole in her heart. The cardiologist feels that the hole in her heart is nothing serious. She will continue to monitor it once a year to make sure it stays that way. The Dysautonomia, on the other hand, is becoming quite bothersome with the dizzy spells, fainting, inability to sweat, and a myriad of other symptoms. In all actuality, Faith's Digestive Tract Paralysis diseases are simply a part of her Dysautonomia. We are now in the process of learning more about Dysautonomia and what this means for Faith, especially since so many of her systems and organs seem to be impacted.

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.

Where to Begin?

My beautiful daughter, Faith.

I suppose the most difficult part of writing any blog is the actual action of beginning one. I am not sure why this is. For me, I think much of it may be due to the fact that I want to have something enlightening or witty to post so that I don't bore my reader. I don't have either to use for the beginning of this blog. What I can share is that I am, as a mother with a beautiful child who has just been diagnosed as having gastroparesis, quite scared and overwhelmed at this point. My emotional state isn't helped out any by the fact that the spell checker on my 2012 edition of Microsoft Word marks the word "gastroparesis" as being non-existent. I guess that this shouldn't surprise me as I had never heard of this disease until last week when my 16 year old daughter, Faith, was diagnosed with it.

In lay-man's terms, gastroparesis is a partial paralysis of the nerves and muscles of the stomach which keeps the stomach from being able to work effectively. Because of this condition, my daughter doesn't digest food well, which has caused her to have almost constant acid reflux, nausea, and pain.  She also has bouts of vomiting once or twice a week because her body has got to get rid of the undigested food somehow. She also tires very easily because her body isn't getting all of the nutrients (or even calories) it needs to function effectively because of the gastroparesis. Of course, up until last week, we didn't know what was causing all of these symptoms.

In many ways, Faith has been extremely blessed. She has only been sick for about seven months. Most people who are diagnosed with this disease are sick for years before doctors ever figure out what is wrong with them. Faith's symptoms surfaced in February 2012, shortly after she had surgery for a burst appendix. We knew it would take her longer to recover because she was septic from the pus and infection that had spilled into her abdomen and apparently festered there for about a week before her body finally realized that she was sick. However, we did not expect that she would stay ill. Neither did her doctor. In truth, to say that  Faith was ill is somewhat of a misnomer. What actually was happening is that she appeared to be on a health roller coaster. Some days she couldn't keep anything down and was in enough pain that she would say something about it. On these days, it was literally a struggle for her to get out of bed. Some days, she had no appetite and little energy. She seemed to be simply going through the motions of living. On rare occasions, she seemed to be the energetic Faith that had existed before her appendix burst.

Since her surgery, we have taken Faith to the emergency room several times for dehydration. Faith has had two upper GI scans using barium radiation. She has had numerous vials of blood taken and tested, but the doctors couldn't find anything wrong except a cyst on one of her ovaries (which is a totally different story altogether.)  Faith was referred to a pediatric gastrointestinal specialist in May who put her on medication for pain and nausea. In June, Faith had both an upper endoscopy and a colonoscopy to see if she had any injuries or blockages in her digestive system. Both tests came back normal. A couple of weeks ago, Faith's GI specialist ordered a gastric emptying scan which showed that she has a marked delay in the rate in which she digests her food. After months doctors and tests, we finally knew what was causing Faith to be sick 99% of the time. Despite the diagnosis, we are grateful to finally have some answers. It really is much easier to face the proverbial dragon knowing what we are up against than it is to walk in the arena with no idea of what is awaiting you.

Anyway, my plan for this blog is to chronicle Faith's journey (and to some extent, our family's journey) through her life with gastroparesis. I also hope to provide some encouragement and insight to others out there dealing with this disease.