Diagnosis and Research

We received Faith's diagnosis of gastroparesis over the phone from her pediatric GI specialist's nurse on September 13, 2012. While we were relieved to finally have an answer as to what what was causing her to to feel so drained and nauseated all of the time, we were also feeling overwhelmed by the diagnosis. I am sure that part of this was due to the fact that we had to wait over a week to actually get in to see her GI specialist. Another part of our anxiety came when we picked up a packet of information about gastroparesis that her specialist prepared for both us and the school explaining what this disease is and how it is treated. It is not conducive to feelings of peace and understanding to read from a piece of paper that your child has a condition in which the nerves and/or muscles in her stomach are partially paralyzed, resulting in an inability to properly and effectively digest food. Nor is it comforting to read that there is no cure for gastroparesis. It was through this packet of information that we discovered that there are dietary guidelines for people with gastroparesis to follow depending on how they are feeling, that a lot of what we have taught my daughter about how to eat in a healthy manner no longer applied, and that all doctors can really do is treat the symptoms that accompany this disease through diet, medication, and sometimes surgery. Nothing we were given in the packet of information provided us with any sense of hope.

Being the type of person who throws themselves into action when a "crisis" occurs, I sat down at my computer and did two things. The first was to inform my family and close friends via Facebook that Faith had been diagnosed with gastroparesis. (We had already personally contacted her grandparents and siblings to let them know what the diagnosis was.)  As usual, I received a lot of support from those is my Facebook circle, which has been a huge emotional boost to this overwhelmed mom. Faith also was blessed with lots of positive thoughts from her Facebook community, which has greatly bolstered her sense of well-being. This is probably the most important lesson I have learned so far in this journey of ours . . . the absolute need to have a strong and caring group of people who love you unconditionally and want to help in any way they can. I am eternally grateful to those family members and friends who provide this for both Faith and me.

The second thing I did at my computer was to use the internet to begin researching what gastroparesis is. I found in my cyber quest that there is precious little factual information out there, though it isn't too hard to find the individual experiences of those who are actually dealing with this disease. At first, I tried to limit my research to reputable sites that address what gastroparesis is. I guess I did this because I felt helpless and wanted to feel like my family actually had some control over this situation. I found the following sites to be informational and helpful:

G-PACT (Gastroparesis Patients Association for Cures and Treaments): http://www.g-pact.org/index.html

This site contains basic information of what gastroparesis is, how it is diagnosed, and what treatments are used to lessen the symptoms that people with this disease experience. It also provides information on current research being conducted for GP, and has educational materials that can be ordered and shared with others. I also took the time to send off for the free "Restaurant Card" for Faith that G-PACT has created for people with this disease, asking restaurant owners/managers to let the person with gastroparesis order off the Kids' Menu or share a meal with another person because of the portion limitations that come with a GP diet.

American College of Gastroenterology: http://patients.gi.org/topics/gastroparesis/

I found this site beneficial because it goes into some detail about the side effects of the medications most often prescribed by doctors to treat the symptoms of gastroparesis. I was able to use this information to further research these medications, which is something I suggest anyone diagnosed with GP (or their loved ones) do, because none of this medications is totally risk free.

The Mayo Clinic: http://www.mayoclinic.com/health/gastroparesis/DS00612

This site was actually suggested to me by my friend Karen W. who took it upon herself to do some research on her own when she learned about Faith's condition. The thing I like most about this site is that it provides a brutally honest look at what gastroparesis is and questions you should ask your doctor if you have (or suspect you have) gastroparesis. The "Questions to Ask Your Doctor" section was particularly helpful in helping me organize my thoughts as I prepared for Faith's upcoming visit with her GI specialist.

Living (Well) With Gastroparesis: http://livingwithgastroparesis.com/

This website was created by Crystal Saltrelli, a Certified Health Counselor who also has idiopathic gastroparesis. What I love most about this site is that it combines factual information about gastroparesis with the personal, inspiring stories of how the creator has learned to positively and successfully live with this disease. This site is full of support and hope - a beacon of light in the otherwise mainly dark realm of GP.

I firmly believe that it is much easier to walk into the proverbial Roman arena with an idea of what type of beast you are expected to face, because doing so gives you a fighting chance to walk away in triumph. Doing my research allowed Faith and I the opportunity to just that . . . Yes, the gastroparesis beast is huge and frightening . . . It does not, however, mean that your life (or the quality of it) is forever destroyed.  We plan on facing GP with the same positive attitude that Faith uses in every other aspect of her life - and we know that, like Crystal, she will learn to live WELL with this disease.

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.