Update

I haven't posted in awhile, so I figured it was time. Emma did really well for a couple of months. We were able to put peas back in her diet, which meant that pea protein was okay. (Many soy-free items have pea protein.)  We found out very quickly though that adding soy back in was not going to work. It took two days of just a little soy to start getting sick again...it began with diarrhea and ended up with vomiting. Since then, we haven't tried adding any other of the 13 food products from her allergen list. 

Once we cleared up from the soy, she started doing well again--but not as good as before. We were thankful for every vomit-free and low-vomit days. Unfortunately though, we are back to being sick. 

It is hit and miss each day, but this week alone she has thrown up a couple of dozen times. We see the GI doctor over Christmas break, so we will see what is next. 

Three Weeks!!!

As of today, Emma has not thrown up in three straight weeks!  Praise the Lord for His many blessings!  In the last 20 months, the longest she had gone without getting sick was five days.

We are still excluding the 13 allergens, which is not always easy.  Some days I feel like I have things under control.  Other days--not so much.  I am really nervous about her going back to school, since this adds a difficult kink, but I am determined to figure out how to make it work.  I will say that I am proud that for the most part I have fed my family more healthy foods over the past two months.

We go back to the GI doctor tomorrow, so I am extremely hopeful that we can add back in some foods that are at the lower end of the allergen spectrum.

I Put My Hand In a Chicken's Butt!

I am a self-proclaimed meat-phobe.  I only eat boneless chicken breast and turkey breast (no other meats including fish).  I don't even eat things with meat stock or meat flavoring of any kind (other than chicken).  And, if I can't thoroughly investigate the meat, I won't even consider eating it (i.e., chicken hidden in a wrap and smothered in sauce does not appeal to me unless I--or my mother who is used to my psychoses--have cooked it.)  For the first year or so of my marriage, I couldn't eat the chicken breast I had cooked because I had handled it raw.  If I drive behind a chicken truck and get attacked by flying feathers or bite into a piece of grizzle, I may not be able to deal with eating chicken for several days.  Okay, I think I have given you enough information to understand my chicken dilemma...and probably refer me to a psychiatrist.  Please don't comment with any diagnoses or try to sway my mind in any way.  I do not pretend it makes any sense.

Enough of the background....on to my chicken dilemma.  Many recipes call for chicken broth, but store-bought broth has onions and carrots, which are two things Emma can't have.  I decided to figure out how to make my own broth and was dismayed to learn that it included cooking a whole chicken (and dealing with the subsequent bones, veins, and other icky parts).  So, I looked into making a vegetable broth.  Of course, the base is onions, so that was likewise out.  When I searched for cream of chicken or celery recipes, I found that a prominent ingredient was....yep, you guessed it--chicken broth. I finally came to the realization that if I was going to make certain recipes, I was stuck dealing with a whole bird!

The easiest part was figuring out what spices/seasonings to use--I just called my Momma and asked her.  She pointed me to a recipe, and after removing the items Emma can't have I ended up using 2 tsp. salt, 3/4 tsp red pepper, 1/2 tsp. thyme, 1/2 tsp. black pepper, and 1 tsp. paprika.  The next step wasn't so easy, so I called Emma into the kitchen for moral support.  I told her she didn't have to do anything but stand there and talk to me as I rubbed the outside--and inside--of this chicken.  I touched the bird long enough to put it into a bowl and then had an epiphany--wrapping my hand in plastic wrap would be like wearing a glove.  Emma had a much better idea.  (Side note:  Emma likes collecting different colored gloves from doctor's offices, so she tends to take a pair from every new physician we visit.)  She ran to her room and grabbed a pair of rubber gloves of which she had duplicates.  Donned with purple gloves, I was ready to feel this bird up!

I rubbed his tummy, his back, and even lifted his wing as I pretended to apply deodorant.  (I find having a sense of humor makes most things more bearable.)  I talked to my bird pal and was fairly comfortable until I had to probe inside its neck hole.  I was not too sure if I was supposed to pull his neck out, so I left it.  Hearing the popping sound of bones and/or cartilage was the exact opposite of what I was wanting from this experience.  Around the time I was giving him a rectal exam, Emma sweetly said, "I love you, Mom."  Amidst the disgust I was feeling at pulling something long and weird out of its butt, I asked her why she was telling me this right now.  Her response?  "Because I know you are doing this for me."

We had chicken for dinner (the kids and I ate the breast while my husband actually got dark meat for a change).  I bonded with my daughter over a bird's behind.  But, most importantly, Emma has the topic for her future college essay:  My mom is my hero because she plays with chicken butt.

Woeful Wednesdays

We are still strictly following the dietary modifications given to Emma.  When I find something we like, I add the recipe into my binder so that I can refer to it later.  I am hoping to try (and approve) enough things this summer that I will have built up a vast supply of recipes once school starts in the fall.  Being a teacher and a mom of two very active children, we spend a lot of long evenings at sporting events.  So, it is important for me to get a handle on cooking for my family before my schedule goes crazy again.  

Overall, Emma is doing a lot better.  However, she has had one really, really bad day a week.  She has been sick less days a week, but it is much more severe.  She basically throws up nonstop one day a week (since she has been on this diet).  And, ironically, it is always on a Wednesday.  As a matter of fact, most of her bad days have fallen on Wednesdays for quite some time now.  Her original diagnosis was cyclic vomiting syndrome (and it is one that has been considered several times since then), which means you literally vomit on a cycle for no reason.  This makes me wonder if that diagnosis may be partially accurate on top of the allergies and other stuff.  It stinks that she has to eat with all these modifications AND is still throwing up.

My Recipe Binder

Soy/Dairy Free Pancake Recipe--Wonderful for Entire Family!

• 1½ cups unbleached self-rising flour
• 1 tablespoon sugar
• ¼ tsp baking soda
• 1 large egg
• 1 cup coconut milk or yogurt (or ¾ cup milk plus 1 tablespoon vinegar or lemon juice)
• 2 tablespoons Earth Balance organic coconut spread

1)    Whisk together the flour, sugar, and baking soda.

2)    In a separate bowl, whisk together the egg, milk, and coconut spread until foamy.  Add to the flour mixture and mix until blended.  Leaving a few small lumps is okay.

3)    Let the batter rest for about 5 minutes while your griddle or frying pan heats up.  Heat to medium high (375 or 400 degrees F) until a drop of water dribbled onto the surface bounces across it.  Brush lightly with coconut spread or spray with non-stick soy-free baking spray. 

4)    For each pancake, drop ¼ cup of batter onto griddle.  Flip as you would regular pancakes.

Note:  You can also add Enjoy Life semi-sweet chocolate chips to the batter.  They are soy, nut, and dairy free.)

This was adapted from the recipe found at http://www.kingarthurflour.com/recipes/self-rising-light-and-fluffy-pancakes-recipe.

Update

We have been very careful with Emma's dietary restrictions for about two weeks now. Overall, she has done well. However, she was extremely sick Tuesday night and all day Wednesday. She threw up over a dozen times. We are unsure if she picked up a bug, accidentally got ahold of something she shouldn't have eaten, or was just physically exhausted from her annual camping trip with her grandparents. She did eat a lot more red meat over those four days while camping than she normally would (I don't cook a lot of meat other than chicken breast), so that may also be part of the reason. Either way, we are hoping it is a fluke. She has some blah days still--but not like she was having. 

Pudding or Slop?

I decided to make instant pudding tonight with coconut milk. I am no chef, but instant pudding is something even my husband could accomplish (sorry, honey, but you know you missed out on the cooking genes). Anyway, I dumped, poured, and stirred just as I would with good ole cow's milk.  Imagine my surprise when I went to eat my delectable dish and found slop instead. Through recent experience and subsequent research, I have now discovered that pudding does not set with alternative milks. 

We can put people in space, but we can't make pudding without a cow. Go figure. 

Soy/Dairy Free Chocolate Chip Cookie Recipe--Yum!

This recipe is adapted from the Original Nestle Toll House Chocolate Chip Cookie recipe (found at http://www.verybestbaking.com/recipes/18476/original-nestl%C3%89-toll-house-chocolate-chip-cookies/detail.aspx).  I purchased all of my soy-free products at Earth Fare.  These cookies are amazing, and you can't even tell the difference!  The original recipe says it makes 60 cookies, but I only got about 36 of them when I made them.

Ingredients

• 2 1/4 cups all-purpose flour
• 1 teaspoon baking soda
• 1 teaspoon salt
• 1 cup Earth Balance organic coconut spread (could probably also use Earth Balance soy-free butter, but it has other allergens for us)
• 3/4 cup granulated sugar
• 3/4 cup packed brown sugar
• 1 teaspoon vanilla extract
• 2 large eggs
• 2 cups (10-oz. pkg.) Enjoy Life semi-sweet chocolate chips (dairy, nut, and soy free)
• 1 cup chopped nuts (optional--I didn't add them.)
• Spectrum Cook It Up! Canola and Olive Spray Oil (or other soy-free cooking spray)--The original recipe does not call for cooking spray, but it definitely helped to use it.

Directions

1. Preheat oven to 375 degrees F.
2. Combine flour, baking soda, and salt in small bowl.
3. Beat coconut spread, granulated sugar, brown sugar, and vanilla extract in large mixer bowl until creamy.  Add eggs, one at a time, beating well after each addition.
4. Gradually beat in flour mixture.
5. Stir in morsels and nuts.
6. Drop by rounded tablespoon onto greased baking sheet.
7. Bake for 9 to 11 minutes or until golden brown.  Cool on baking sheet for 2 minutes.

Pan cookie variation:  Grease 15 x 10-inch jelly-roll pan.  Prepare dough as above.  Spread into prepared pan.  Bake for 20 to 25 minutes until golden brown.  Cool in pan on wire rack.  Makes 4 dozen bars.

I Made Weapons For Brinner

Tonight I attempted to make soy and dairy free biscuits from scratch.  Let me be clear, my idea of "from scratch" just days ago was really "from Bisquick".  Although Bisquick is dairy free, it is not soy free.  So, I used a popular recipe I found online and swapped the regular milk with coconut milk and used organic coconut spread in place of shortening.  

I don't know if it was the substitutions I made, too much kneading, not enough kneading, or the recipe gods playing a cruel joke on me, but these biscuits were far from spectacular.  They were flavorful enough, but were super hard on the outside and slightly fluffy on the inside.  I have decided to keep a few on hand in case we are attacked by ruthless, starving children.  I can pelt the biscuits at the vicious intruders.  They may leave a few welts, but I can be comforted by the knowledge that a somewhat edible biscuit lies on the inside of these flour rocks.

"Hopeful For the First Time In Over a Year"

These were her GI doctor's exact words at Emma's appointment today.  He let us know that her HIDA scan showed that her gall bladder was functioning perfectly, which is great.  He also discussed the results of the pill cam.  It showed no internal damage--no Crohn's, no celiac, no evidence of stomach swelling.  Everything looked good.  She does have the rapid transit through the small intestine, which is the cause of her diarrhea.  He can't be 100% sure why, but it is very likely that it could be her body trying to quickly flush out the allergens she has been unknowingly eating.  (She is showing no signs of malabsorption, so the rapid transit does not appear to be a concern at this time.)

He was excited to hear that she has only thrown up once since we started the new diet (today is day five), and we are hopeful that this will persist.  We will continue to completely eliminate these 13 foods until our next appointment (August 22) and see what kind of progress she is making.  If she is asymptomatic, then we can add back the level one allergens one at a time.  (Unfortunately, soy was a 3+, so I guess there's no hope of adding that one back in any time soon.)  The doctor was honest with Emma in telling her that he does not expect her to get completely better, but he is very hopeful that her symptoms will be greatly minimized.  That's tough to hear, but I appreciate his honesty.  And, I am thankful that he no longer sees the need to send her to the motility specialist in Ohio at this time.  That is great news!

Once again Emma was a bit of a conundrum.  He said most people have internal damage from the allergens, and that is what alerts the doctor of the need to test for food allergies.  Emma did not show any of these signs.  Apparently, Emma's body likes to keep us guessing, but it is comforting to hear that these foods have not done any damage.

On another positive note, Emma didn't even come close to slapping the doctor today when he examined her abdomen.  There have been times where he and I could tell it took everything in her to resist pushing him away.  Her discomfort was not nearly as bad today.

All in all, today was a good visit.  We will pray for continued progress for Emma and creativity on my part when it comes to cooking.  I know some days will be more difficult than others, but we are up for the challenge.

Soy and Dairy Free Honey Mustard

This honey mustard is soy and dairy free.  I know it is not easy to find honey mustard that is free of both of these ingredients, so I wanted to share this product.  Emma gives it her seal of approval, which is saying a lot because she thinks honey mustard belongs on everything.  (And, no, I have not received any money to say this.  Just thought I would share.)  I purchased it at a local health food store.

A Speedbump?

Today was the fourth full day that I have not given Emma any of her allergens.  (It took a few days after being diagnosed for me to figure out how to even begin to manage things.)  However, today was not a good day for her.  She spent the majority of the day on the couch with stomach pains.  Her throat hurts a lot when she is sick, too.  I have always assumed it is the reflux, but I started wondering if it is part of an allergic reaction once we found out everything that could be affecting her.

So...no allergens for four days, yet fully symptomatic today (except for the vomiting and diarrhea).  She did end up getting sick this evening at church, but it was just one time.  I'm not sure if this means we are making progress (less times getting sick) or if it means we still haven't found the source of everything (still getting sick).

I'm hoping to get some answers from her GI doctor tomorrow.

On a positive note, I am starting to learn how to cook for her new diet.  I even tried making rainbow chard (epic fail) and homemade fries (big hit).  I use a lot of coconut milk and coconut-based products.  I am so thankful that she did not end up allergic to coconut.  It was one of her false positives on the skin test.  If she had been allergic to dairy, soy, almond, AND coconut, then it would have wiped out all milk options!

Capsule Endoscopy Results

The nurse from the GI doctor called today with Emma's results from the pill camera she swallowed a couple of weeks ago.  The pill cam is pretty cool because it literally captures images from the point where the patient swallows it through the next eight hours of the digestive system.  The nurse had told us it would take a couple of weeks for the results since the doctor has to watch the entire eight hours.  I'm not sure why he can't sit around with his kids and have family time while watching my child's guts...that's probably something my brother and I would do.  :)

Anyway, the nurse said that Emma does not have Crohn's, which is obviously wonderful.  Praise the Lord for that!  She does, however, have rapid transit through the small intestine, which is consistent with functional abdominal pain.  Her food passes through the small intestine in 59 minutes.  I forgot to ask how long it should take, so I Googled it and found out the food should take about three hours to pass through the small intestine.

I'm not sure yet what these test results mean, but we will be seeing the doctor on Thursday to discuss these results as well as her food allergy ones.

Feeling Empowered

As I am going to bed tonight (actually this morning--my sleep pattern is so off in the summer), I am realizing that today is the first full day that Emma did not ingest any of her allergens. Of course it will be awhile before we know if this is the cause of everything, but it is a step. 

By the way, her allergist said that some people don't react externally to allergens. In rare cases (yep, there's that word rare again), the stomach swells as a result of the allergy. This could be the cause, but it will take time to figure it out. 

As for now, I will rest well (for a couple of hours at least until time for church) knowing that I am doing what I can for her. Right now in this moment I do not feel the weight of depression or of being overwhelmed by having a sick child. (These feelings have become all too familiar over the past year and a half.) Instead I feel empowered. 

Bad News....aka Food Allergy Results

Emma had a lot of potential food allergies show up on her scratch test.  However, with people that have as many environmental allergies as she does, it is common for false positives on the foods.  After the scratch test, she was sent to have blood drawn to see which ones are real and which are not.  I got the call a few days ago, and it has turned our world upside down.

As I stated in an earlier post, Emma already has a very restricted diet.  Back in August, we had to completely cut out milk products.  In April of last year, Emma was not lactose intolerant (according to a biopsy), but she was in August (according to another biopsy).  Apparently, we discovered it right around the time she was "becoming" intolerant.  Given her history, her doctor wanted her on complete lactose restriction.  (We have seen no positive changes in her health.)

So, she was already on a diet with no fried foods, fatty foods, caffeine, carbonation, chocolate, or milk.

But, as of this past Wednesday, she can no longer have any of the previous foods as well as soy, almonds, peanuts, strawberries, carrots, peas, garlic, onion, oysters, tomatoes, lima beans, or white beans.  The good news is we don't eat oysters.  The blood tests revealed that she is allergic to all of these, so she is on complete restriction.

I have since learned the following:

• Soy is in everything--even gum.
• Soy free butter has pea protein.
• Chicken broth has carrots and peas.
• Soy is in everything--even cooking spray.
• Garlic is in mustard.
• Soy is in everything--even mayonnaise.
• Emma can't have her beloved honey mustard because, yes, soy is in everything.
• The green gummy bear (Haribo brand) is strawberry flavored.
• Soy free stuff is ridiculously expensive, and it often has peas and/or carrots in it.
• Ketchup has tomatoes in it.  (Ha!  I obviously knew this, but we were so intent on finding something in the fridge for Emma to dip her bland grilled chicken in.  We got so intent on looking for something without soy or garlic in it that we forgot all about the tomato allergy!)

As for right now, we are figuring out how to change everything.  Shopping for all of her food allergies is difficult--and expensive.  I spent $93 at the health food store today and basically walked out with some spices, cooking spray, "butter", and a few other basics to cook with.  

Emma is struggling a bit with being down about all of this, and I feel like I am forcing her to eat.  (It is not the first time I have had to force her to eat.  Back in December, she started to refuse food for fear of getting sick.  Her doctor told her if she lost any more weight and didn't start eating that he would have to put in a feeding tube.  That was an eye opener for her since she knew it would stop her from being able to play sports.)  I am working hard to find things she can eat so that she can feel as "normal" as possible.  I am hoping to get a firm grasp on things before school starts back in the fall.

On the bright side, I found some honey mustard she can eat, so I was Supermom today!  Shawn cooked her a pork chop, so he was Superdad!

I Played With Her Poo....Again!

Emma had three procedures done the week after school was out.  On Tuesday at noon, she began her fast (as soon as volleyball practice was over).  Early Wednesday morning, she swallowed a pill cam that was the size of my toe.  She had no problems at all swallowing it.  (I remember the days she chose to chew a Tylenol rather than swallow it.  Thank goodness she has progressed!)  Unfortunately, she couldn't eat for four more hours, but she had volleyball practice.  They said she could go as long as she didn't sweat, bend over, or become too active.  I hung out with her so that I could keep an eye on her.  She mostly just worked on serves and bumps, and we were very careful to follow all the rules.  When practice was over, she was able to eat--but only half of what she would normally eat.  I think that was the worst part--watching my child who hadn't eaten in 24 hours only able to eat a half of a sandwich.

My husband and I spent the next few days probing her poop looking for the pill cam.  If it didn't pass, it would have to be removed.  I will spare you all the disgusting details this time, but I will say that it included a fresh stick from outside each time she went to the bathroom.  I guess our neighbors must have thought I was sending Emma outside for hickories.  I will also say that we were sure to get sticks straight off of a tree (instead of off the ground) when we roasted marshmallows later that week.  (We never did find the camera, so they had to do an X-ray the next week.  It did not show up, so we must have overlooked it.)

On Thursday, she had food allergy testing done.  We know that she has a massive amount of environmental allergies, and she has been taking medicine and shots for these for about five years.  (Although I will admit that we slacked off on her shots this school year.)  They retested all of her environmental allergies (they were still there) and did food allergy testing (see next post about results).  I had decided to schedule this a few weeks ago in hopes of finding some answers.  She left this test and, of course, went to volleyball.

On the following Monday, she had another HIDA scan done.  Her GI doctor wanted to be sure the initial results were accurate.

On a side/funny note:  Her GI doctor told Emma that he would sit down and eat popcorn while he watched her pill cam video.  We decided to buy him a bag of blue kettle corn (that is known to turn your poo quite blue--or sometimes even lime green).  We dropped it off at his office, and Emma wrote him a note telling him it was special popcorn to eat while he watched her video.  She also warned him that it would turn his poo blue/green.  Like I said, her doctor is a good fit for her.  He has a great sense of humor.

Middle School Roller Coaster

Sixth grade was tough, and Emma was once again on intermittent homebound.  She also had a 504, which allowed her to have certain testing accommodations due to her illness.  When she tests, she has extended time, frequent breaks, and a small group environment.  This is to allow her to leave and get sick as often as necessary.

Three things were our saving grace this year:  1.  The support system offered by our friends, family, and church.  2.  Her amazing teachers--they were so understanding and helpful.  If it had not been for their willingness to communicate with me and listen to my concerns, I am not sure she could have been so successful this year.  It was one thing when we were in the same school building, but it was a lot tougher with her in a totally different school.  3.  Sports--without sports, Emma probably would have lost all resolve to persevere.

Emma has played soccer since age four, and she has played basketball for the past several years.  This year, she played volleyball, basketball, and then soccer.  She spent many days running to the bathroom to throw up and then back to class.  She knew if she toughed it out, she would get to play her sports.  If she went home, she couldn't play.  (Her GI doctor is fully aware of her playing and is supportive as long as she eats and drinks properly.)  There were many times that she would be throwing up right until the last moment before a game started.  Very few people--including her coaches--even knew she was getting sick because she refused to let them know.  Much to her dismay, I did my best to keep them informed.  She was always worried they wouldn't play her if they knew she was sick, but this never seemed to happen.  One day she even called me from the bathroom at practice.  She had diarrhea so severely and such intense pain that she could not even move off of the toilet.  Her poor coach did not even realize she was in the bathroom because she slipped away, and she was devastated that Emma was alone while in such pain.

We had a couple of scares this year.  She threw up blood twice.  Not just a little blood.  But a lot.  The second time was just days after she had the BRAVO procedure done.  The BRAVO is a device that attaches to her esophagus.  It is a detailed test for measuring the amount of reflux someone has.  (It did show a bit of reflux, but not enough to account for her extreme vomiting.)  After a couple of days, it detaches on its own and leaves the body.  They scanned her to make sure it was gone.  Since it was, they determined that if there was no more bloody vomiting, then it was likely it came from the BRAVO device detaching.  (This is extremely rare, but we are good being rare in this house.)  She has not thrown up blood again since then.

The last time we saw her GI doctor, he was disappointed with her progress.  At one point, he had even sent us to a rheumatologist to have her checked out, since the back pain rarely subsides.  The rheumatologist did not feel it was arthritis-related (we have a family history of juvenile rheumatoid) or autoimmune related.  He decided to run a few more tests and then possibly refer her to a stomach motility specialist in Ohio.

We set up some procedures to be run as soon as school was out.

I Played With My Daughter's Poo

It doesn't take a detective to realize that I am making all of these posts back to back on the same evening.  I just decided to start blogging about my dilemma with Emma tonight, so I am attempting to get caught up to date.  I honestly don't remember all the tests and procedures that have been done, but I do remember one experience in great deal.  It was the day (well, one of the days) I played with my daughter's poo.

At one point during the school year, we were asked to collect a vial of Emma's poop so that tests could be run.  She had been really sick, and the on call doctor wanted to be sure it wasn't something new bothering her.  (The on call doctor is sometimes one from the children's hospital.)  I had a couple of sterile vials at my house (I mean, who doesn't?), but I didn't have a "hat" to collect her poop in.  My husband went from doctor's office to doctor's office trying to get someone to let us have one.  The only place that had one was the local hospital, and they refused to give us one since she wasn't a patient there.  Meanwhile, my poor child was in desperate need of going to the bathroom, and was thus doing the butt clench in order to refrain.  Out of desperation, he called the children's hospital, and they told him we could collect her poop in any bowl.  So, I do what any loving mother would do....I ask Emma to clench a little while longer so that her dad could stop at Dollar General to pick up a couple of bowls. It's not like I have fine China or anything, but I just wasn't sure any of my bowls screamed, "Please defecate in me!"

By the time Shawn got home, Emma was ready to go.  I just had to give her a couple of rules:  1.  You have to hold your pee in.  I only need poop.  2.  I have to catch it in the bowl.

****SPOILER ALERT:  This is about to get disgusting.  If you have a weak stomach, you may want to skip to the end!****

I followed Emma into the bathroom, bowl in hand.  I reached to hold it in the toilet, when Emma politely tried to dismiss me.  It was at this time she realized I had to hold the bowl while she pooped.  I assumed the position, and she busied herself.  A few moments later, she exclaimed, "I don't think I feel very comfortable with this."  As I was squatting down, holding a bowl, and catching her poop, I felt very confident in telling her that I was pretty sure I was the more uncomfortable of the two of us at this very moment.

Eventually, she looked at me and told me she was pretty certain she had made a large enough delivery for me to get what I needed.  I donned a plastic bag and proceeded to take hold of my rancid treasure.  I guess I didn't quite realize just how hot poop is when it comes out of a 98.6 degree body.  The hot sensation in addition to the sight and smell was involving just one too many of my five senses, and I began to wretch as I laughed.  Thus, a pattern of events began...grab, laugh, wretch, drop, grap, laugh, wretch, attempt to shove into a plastic container, wretch, wretch, laugh.....  When I was sure we had enough material so as not to have to repeat this process, my husband slapped the lid on the container.  It immediately steamed up, after which I began screaming, "It's steaming hot!  It's steaming hot!"  And then I wretched some more.  My husband and I were laughing profusely at this point, and poor Emma was just trying to finish her business.

****End of disgustingness.  The rest of this post is as safe to read as possible.****

I sent my husband to turn in her product at the hospital.  Little did I know he was going to have to sign it in, sit in the lobby, and wait for the poop's, I mean, his name to be called.  I guess it was good that he put it in a paper bag like I told him to.

By the way, all her results were normal.  No bacteria.

Cowboy Boots and Silly Ties

Well, I was wrong about one thing.  Emma was not just another name on the sign-in sheet at her new GI doctor.  He spent almost an entire hour in the office with us.  I was very careful to say just enough about our old doctor to let him know about the lack of care she had received but not so much to badmouth him.  (And, for the record, I have been very careful about not sharing his name as much as possible because I am sure there are plenty of children out there who have been helped while under his care.  We just weren't that lucky.  I also thought it was very classy of our new doctor that he did not talk negatively about the previous doctor.)

This new doctor was very straightforward, and I could tell within a few minutes that he was a perfect fit for Emma.  She loved his silly tie, his cowboy boots, and the funny way he obsessively rubbed the edges of his goatee...but most of all, she loved that he talked to her.  And that he had a plan.  It was June 21, 2012, when she started seeing him, which means the school year was over and summer was in full swing.  Emma had missed thirty-something days second semester and was put on intermittent homebound to help fill in any gaps from her absences.

At this time, Emma was throwing up 4-5 days a week, a dozen or so times each day (sometimes more). She had diarrhea most days, and her pain often woke her up at night.  The doctor told her that it was his goal to at least cut that in half before the end of summer.  He told her he couldn't realistically promise her she would be completely better before her next school year started, but he was going to do everything within his power to help her.

The first thing he did was take her off of the high doses of Hyoscyamine and put her on a low dose of Amitriptyline.  He also put her on Ranitidine in the morning and at night.  The toughest thing for us was the strict diet he put her on.  She was no longer supposed to have fried foods, fatty foods, caffeine, carbonated beverages, chocolate, or processed foods.  She was to eat six small meals a day.  Basically, she was put on the GERD diet for reflux.

We spent the rest of the summer following this diet, taking the new meds, having tests run, and being heard by this new GI doctor.  (He spends at least 30-45 minutes in the office with us every time Emma is seen, and I have noticed he does the same for all of his patients.)

By the time school had started back, we had still had no diagnosis, but Emma had lost 16 pounds (because of the new diet) and was now only throwing up 2-3 days a week, and sometimes only a half a dozen or so times each day.  We had made progress!

Pediatrician for President

Like I said previously, we adore our pediatrician.  He is a wonderful Christian and dedicated family man.  When he heard about the insufficiencies of our GI doctor, he hugged Emma and apologized immensely.  We spent much of this visit talking about what was best for my child.  He said there was another doctor to whom he could refer us.  He added that many people did not like his bedside manner, which is why this specialist is not generally his first choice.  We all three agreed (Emma included) that the worst bedside manner in the world would be better than what we had experienced.

I think the worst part about this visit was seeing how much our beloved pediatrician wanted to do for my child but could not do.  Since he is not a specialist, insurance will not cover certain tests ordered by him--no matter how valid they are.  So, basically, the man who medically knows the most about my child--every cold, every asthma attack, every everything--can not help her.  Instead, we are stuck with a specialist who sees my child as just another name on the sign-in sheet.  This is the first thing he said he wanted to change when he becomes President some day.

Emma and I both said we would vote for him.

The Stupid Doctor

I completely trust our pediatrician.  He is amazing and genuinely cares about his patients.  He referred us to a local GI doctor, and our next adventure began.

There are several doctors in this group, but we were not fortunate enough to get one that took an interest in Emma.  He spent about ten minutes with us, diagnosed her with cyclic vomiting syndrome, and started her on Hyoscyamine to help reduce the vomiting.  (At this appointment, I asked if it was possible something was wrong with her gall bladder.  With her symptoms and our family history, it just seemed likely.  He said it was not at all possible.)  

Unfortunately, the medicine did not make any difference whatsoever, and this ten minutes of face time was all we ever got with this doctor.  When I called and left messages, I would not get a return call.  Instead, I would receive an email from the pharmacy a day or two later telling me I had a new prescription to pick up.  I would have to call the pharmacist or research the medication to even know why it was being prescribed to my daughter.

I found myself calling several different times with very similar results.  At one point, I actually got a nurse on the phone.  I told her that the occurrences of vomiting had lessened slightly, but the diarrhea had intensified.  (Since diarrhea is not a technical symptom of cyclic vomiting syndrome, this was obviously something about which I was concerned.)  Her response was, "Diarrhea?  When did this symptom start?"  I told her it was one of the things I talked to the doctor about at our initial visit, but she told me this symptom was not listed anywhere in Emma's records.  Wow--one of her main symptoms, yet the doctor never felt it important enough to write down.  This time I did get a call back, and it was to schedule a HIDA scan to check her gall bladder and an upper GI.

While chatting with the doctor at the hospital (before her procedures), he essentially told us that he was doing the HIDA scan against his better judgment.  Weeks before this, he had no problem ordering a brain scan that cost us $1000 out-of-pocket, yet he did not want to run this test that seemed to fit her symptoms.  

Once the tests were complete, the doctor came back and told us that nothing was wrong with her gall bladder (along with an "I told you so") and that she also did not have celiac.  We did not get any other answers at this time.  I talked to him about the diarrhea, and he acted like he had never heard about this symptom.  I also asked him if it was characteristic of cyclic vomiting syndrome.  He said it was not, yet he increased the hyoscyamine.

After this, I called the pediatrician to schedule another visit with him.  This GI doctor was making no real efforts to help my child, and it was time for us to make a change.

How It All Began

It was late December 2011 when my then ten-year-old daughter, Emma, started throwing up profusely.  At the time, I thought it was a normal virus that may have been going around her fifth grade classroom.  Little did I know that it was the beginning of a tumultuous illness.  

A week or so later, she became ill again, and I had just assumed that this virus had yet to run its course. Over the next few weeks, this presumed illness kept resurfacing.  As a teacher in the same school Emma attended, I found myself being pulled out of class time and again to tend to her.  (I was very thankful that I was so readily available.)  

The episodes of vomiting became more frequent, and we started noticing other significant symptoms:  diarrhea, headaches, severe abdominal pain, back pain (presumably the spine), and lethargy.  Some time around late February or early March (I'm not sure why I waited so long to have her seen), we ended up taking her to the emergency room at a children's hospital.  I am not the emergency room type, but her pain was intense, and we were tired of seeing her sick.

The ER doctors asked lots of questions, took a history, drew blood work, and ran some scans.  Eventually, one of them came back into the room and announced, "Well, she doesn't have a brain tumor."  Brain tumor?!  Seriously?  Not only had this never crossed my mind, but I certainly don't think this is a phrase you nonchalantly proclaim.

Ten minutes later, we were released from the ER with no other answers and a suggestion to visit our pediatrician.