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.

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.

Pumpkin Smoothie Recipe

I ran across a pumpkin smoothie recipe on the Skinny Kitchen blog that is a healthier version of Jamba Juice's Pumpkin Smash Smoothie. I decided to tweak it a bit to fit the needs and tastes of my daughter. The finished product was yummy, so I decided to post it here. This recipe made enough for both of my daughters still living at home, my husband, and myself to have a 4 ounce smoothie, so adjust amounts as needed.

Pumpkin Smoothie Recipe
2 cups low fat vanilla yogurt
1/2 cup canned pumpkin (I used homemade pumpkin puree)
1 cup vanilla almond milk
2 Tablespoons of sugar or other sweetener
1/2 teaspoon pumpkin pie spice
1/2 teaspoon cinnamon
2 cups ice

Blend all ingredients in a blender until smooth.

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.

Applesauce Pancakes

One thing I have been trying to do is find recipes that fit in with the low-fat, low-fiber gastroparesis diet that are also healthy. This is one recipe I found on Food.com that doesn't use eggs or milk and includes applesauce to up the nutritional value of the food. Since my daughter doesn't have diabetes, she drizzle them with maple syrup. In addition, everyone else in the family likes them as well, so we don't have to cook something different for Faith.

Applesauce Pancake Recipe:
2 cups white flour
4 teaspoons baking powder
1/2 teaspoon salt
2 Tablespoons sugar
2 cups water
1/2 cup applesauce
1 Tablespoon cinnamon
1/4 teaspoons vanilla extract
Canola or Olive Oil cooking spray

1. Combine flour, baking powder, salt, and sugar in a medium bowl.

2. In a second bowl, combine water, applesauce, cinnamon, and vanilla.

3. Add liquid ingredients to dry ones and beat together until there are no lumps.

4. Preheat griddle or skillet to 350 degrees. Spray lightly with cooking spray.

5. Pour about 1/4 cup batter for each pancake onto griddle or skillet. Cook pancakes have a bubbly surface. Turn pancakes and cook until the undersides are golden brown. You will need to gently press the pancakes down after you have turned them if you like your pancakes thin.

Changes . . .

Having a diagnosis for what was making Faith so ill didn't change the fact that she still suffers from daily pain and nausea, as well as frequent bouts of vomiting. However, finally having a diagnosis of gastroparesis has changed several aspects of her life in drastic ways.

The most obvious of these changes is directly related to the disease itself. We have had to pretty much change the foods Faith eats, how often she eats, and the amount she eats at each "meal". Faith has a pretty severe form of gastroparesis and this means that she has to limit the amount of fats and fiber she ingests because both of these things are extremely hard to digest. Think about being a teenager who is banned from eating hamburgers, french fries, potato chips, donuts, cake, cookies, and the like because your stomach is barely functioning. Most raw  fruits and vegetables are also out, as are all whole wheat and whole grain breads and pastas because they are hard to digest. (Actually, most cooked and canned fruits and vegetables are out because of their fiber content.) Not to mention the fact that you feel totally full after eating just a few bites of food. Of course, the latter is due to the fact that Faith's stomach is struggling to digest the foods she has eaten, so they are becoming stacked at the top of her stomach (which is one of the culprits that leads to her throwing up.)  For Faith, eating now consists of about a cup of low-fat, low fiber food ingested every two hours, unless, of course, she is having a "flare-up" period where she is either vomiting or has severe nausea, then she has clear liquids instead of solid foods. The cup of food is actually a bit less than is recommended, but it seems to be Faith's "magic" number at this time - if she eats more, she gets more nauseated and has more pain. Because of this, Faith has to choose her foods wisely so that she can pack both nutrition and calories into each meal. We are a bit worried because she has lost 6 pounds since her diagnosis less than a month ago, but since her weight falls at the lower end of average for her height, the doctors are taking a "wait and see" approach, hoping that her weight loss will level off as she gets used to the new diet.

A second change for Faith has been the switch from attending public high school to doing her schooling via the home-hospital route. because she has been so sick since February, Faith's attendance at school has been intermittent.  Partly due to the fact that the doctors finally had a diagnosis for what was wrong with her, and partly due to the fact that her school got a new principal this year who decided that it was time to do what is best for Faith, I now help her complete her assignments at home and a teacher from the school district comes for an hour two times a week to administer tests and provide Faith with extra tutoring in math. The benefits of this arrangement come in the form of less stress for Faith. It gives her the chance to learn how to live with gastroparesis without having to deal with the pressures of meeting deadlines set by teachers. The home-hospital schooling situation takes into consideration the fact the students will have bad days in which it will be hard to get out of bed, let alone do their schoolwork. Like many students on home-hospital, Faith has prescriptions for medications she takes when her nausea and/or pain are severe that make her extremely drowsy.   Because of this, due dates for assignments are not set in stone. The student can take an extra day or two to finish work if needed.  One of the biggest drawbacks of this schooling arrangement is that it lacks the social aspects of being able to hang out with your friends before school starts, attend school dances, and the like. I know Faith misses the face-to-face daily interactions with her friends, but thanks to modern technology, she can still talk, text, or chat with them as she feels up to it. She and her friends make plans to get together in person when she feels up to it. Of course, it is our goal to get her back in school as soon as she feels she is ready to do so.

One thing that hasn't changed so far in this process is Faith's genuine enthusiasm for life and positive attitude. She hasn't once asked "why me?"  When people ask her how she is doing, Faith just smiles and tells them that she is "good", even on her really bad days.