"...Not Because (it is) Easy..."

       Over the last two years I’ve been deeply encouraged by figures of history who have done tremendous things, despite illness.  When I was a child we learned about heroic figures such as Abraham Lincoln or John F. Kennedy, but somehow their ailments and struggles were omitted from what we learned.  Perhaps historians felt these facts would somehow make them weaker figures.  Yet, I have found that knowing these figures’ struggles and hardships have left me with an even greater awe and admiration for these people I have never met.  In fact their personal struggles, I believe, make these figures’ stories more beautiful.

       It all started last year when Christopher got a cold and was out of school for a couple of days.  His class was learning about Theodore Roosevelt.  I got several books from the local library and was fascinated to learn that he

Christopher as JFK next to his project for school.

was sickly as a child, and often struggled to breath.  As we read about Theodore and then Franklin (who had polio) I was very intentional about trying to connect how these leaders were able to accomplish great things in the midst of pain, hardship, and illness.  I definitely got the “Yeah, yeah…” response, any seven year old little boy might give.  Yet, it challenged me, as I started to recall other biographies I had read, where people overcame not just personal hardship but physical ailments to accomplish important things.  Abraham Lincoln struggled with depression, Helen Keller was blind and deaf, and John F. Kennedy had such severe back pain that he had meetings with close advisors while soaking in his bathtub! 

We were so proud of the hard work he put into this project!

A little over a week ago Christopher participated in history day at his school.  He spent about three weeks researching John F. Kennedy in preparation for the speech and project he created.  It’s embarrassing to admit, but all I knew about JFK before this project was that he was Catholic and was assassinated.  It was eye opening to learn more about his journey, especially his illnesses and personal tragedies.  Christopher and I discovered together that this historical figure was very sick as a child, dealt with severe chronic back pain, was diagnosed with Addison’s disease, and had two siblings die as young adults.  Kennedy refused to let these challenges prevent him from accomplishing his goals, and Christopher seemed to connect this more to his own life this time.  Again I was inspired and hopeful.

One of the many notes he took for his project.

            John F. Kennedy said, “We choose to go to the moon… and do the other things, not because they are easy, but because they are hard.”  When Christopher was in my belly, I often prayed that he would be a “fighter.”  That this child I had would know the importance of not giving up, no matter what.  LCHADD can make certain tasks feel harder at times, but this doesn’t have to be the end of Christopher’s story.  The longer I live, the more I believe that the power to change things for the good is born out of struggle.   My hope is that Christopher will use his struggles to create beautiful and powerful changes in this world.

*In loving memory of Grandma O, who adored JFK and my sister, Veronica, who taught me about courage and pain.

Life is Filled With Seasons!

               As I sit in front of my screen trying to process the last month and half, I keep coming back to a conversation that I had with Dr. McGuire at NIH, awhile back.  He said something like, “A person’s metabolism is always changing…and this will affect Christopher.  What he might be able to do one year he might not be able to do the next, and he/you will have to be okay with that.  He might be able to handle baseball just fine this year, but perhaps can’t do it in first grade…but does fine with it in third.” I appreciated this word of wisdom, and tucked it away in a suitcase in my brain labeled, “Things to remember”, to be taken out at a more appropriate date.

Beating mom at Rummi!

            The appropriate time was February, but it hit like a ton of bricks.  January 2, 2017 Christopher came back from our Christmas trip to Maryland and Pennsylvania and was really exhausted.  He was suppose to return to school that week, but his body was just feeling too tired so we rested.  By the end of the week he had come down with a cold.  This cold metamorphosed into pink eye, and then 4 days later into a sinus infection, which led to antibiotics.  Christopher tends to get secondary infections with colds, but this time his body was so much more tired. Then one evening after being on antibiotic for about a week, he woke up at 4am complaining that his whole body felt weak and it was hard to sit up. 

            I gave him Lipistart and honey, then watched him as he fell back asleep.  Was he breathing okay?  Had this turned into pneumonia?  Was his heart okay?  Could he have developed cardiomyoapthy?  This new word, “weak,” scared me.  It was something that I have read other LCHADDers describe.  It was something other parents talked about at support conferences, but until then Christopher had never verbalized this feeling.  I was scared.  What if I missed something?

            That day led to a plethora of observation, phone calls, questions and blood work.  Christopher’s cks came back normal, the doctor said his heart sounded fine, and yet here we were.  Christopher wasn’t feeling well, and was not his normal vibrant self.  He went through several days where I had to assist him to his bedroom or the bathroom because he felt too weak to do it himself.  Our metabolic team, and another metabolic doctor in PA both confirmed that he was still within normal range for an “LCHADD” recovery after illness.  This provided some comfort, but Christopher had missed over 20 days of school since Christmas…it was the longest he missed consecutively since he started school.  So it didn’t feel like his normal.  His pediatrician agreed with me but what could we do other than wait?

            That is what we did; wait.  For about six weeks we took it easy did low key activities and homeschooled.  As much as we could, we did half days at school.  I knew we were headed into unchartered territory with our experience of LCHADD, so I reached out to friends.  I took comfort in older LCHADD parents who shared their wisdom and experience.

When he went back for half days he had fun staying inside with a couple of buddies for low-key recess!

            Then one day he went a full day of school.  Then the next day he felt like he could play catch with a baseball.  Then his best friend came over and they ran around the house and he didn’t crash the next day.  Why?  Why did recovery take so long this time?!  I think the hardest part is that there is no way to know.  It would be nice if LCHADD was like a mathematical equation where 2+2 always equals 4.  The fact is that with a cold: Proper hydration + Proper nutrition = most often recovery…but not always, and not always as quickly as one might predict.  LCHADD just gives way to a certain level of unpredictability that, eight years in, I still struggle to wrap my mind around.

A moment I remembered how blessed I am.

            But guess what?!  Amidst all the uncertainty and the length of time of this last recovery; Christopher is doing well now!  And I am reminded that life is filled with seasons.  A sick season may prove hard and at times scary, but I hope I will always remember the beauty that is born from this season too!  First, there are the extra long story times we have, with books I never knew existed, or new board games to learn to play!  Then there are moments of puzzle fun, legos, and this January many episodes of "The Andy Griffth Show."   Scholastically, I have a better understanding as to what they are learning at school.  He gets one-on-one “mommy tutorial” (for better or worse) and is challenged to know about subjects they might not cover as a second grader (this last episode he did a research project on dynamite and we studied the body/circulation).  And so as hard as these periods of illness may be, I know and trust that these moments we have together will produce something special in him.

Christmas Cookie Reciepe!

     I do love Christmas time.  I love the music, the lights and staring at our Christmas tree...but I also love the smells!  The cinnamon, the cloves pushed into the orange, and the cookies!  Last year I promised Kristy that I would get this recipe posted, and I am so sorry that I didn't!  But alas, here it is, our Sugar Cookie Recipe.  I can't take credit though, it was my grandma's recipe that I exchanged the butter out for MCT butter...and it just so happened to work perfectly!  The MCT Butter recipe came from a dear LCHADD parent in Canada, so it was a group effort!
     I will start with the MCT Butter recipe because you will need to make this first and follow up with the sugar cookie recipe.  Enjoy!

MCT Butter

Ingredients:

·      1 tablespoon corn starch

·      3/4 cup skim milk powder

·      1 tablespoon lemon juice

·      3/4 cup water

·      1 cup MCT oil

Directions:

1.     Mix lemon juice, water and oil into a pyrex cup.

2.    Sift dry ingredients into a small sauce pan.

3.    Turn stove on medium heat.

4.    Slowly pour in liquid while mixing with a whisk.  (Alternate with a spoon if dry ingredients get caught in crevices of pan.)

5.    Continue to mix over medium heat until butter thickens and is smooth.

6.    Keeps in fridge approximately 2 weeks.

Tips:

* This recipe makes 2 cups of butter, so 2 cups of butter has 1 cup of MCT oil.

* DO NOT USE THIS RECIPE IF YOUR CHILD HAS MCADD or cannot process medium chain fats!

 

Grandma’s MCT Sugar Cookies

 Ingredients:

·      1/2 cup MCT Butter

·      1 tsp. salt

·      1 tsp. vanilla

·      3/4 cup sugar

·      3 egg whites

·      2 1/2 cups all purpose flour

Directions:

1.     Make MCT Butter using the attached MCT butter recipe.

2.    Combine MCT Butter, salt, vanilla, and sugar in a large mixing bowl.

3.    Beat three egg whites in a small bowl, by hand, until slightly frothy.

4.    Pour egg whites into large mixing bowl and stir to combine.

5.     Sift flour and mix well.

6.    Chill thoroughly in the refrigerator.  (This will take at least 2 hours!)

7.    After dough is chilled, pre-heat oven to 350°F.

8.    Line two cookie sheets with parchment paper.

9.    Flour counter top and rolling pin.

   10.  Take approximately 1/3 dough, lightly flour both sides and roll out flat with rolling pin until 1/4 or 1/8 inch thick.  Use cookie cutters to cut desired shapes.  Place cookies onto parchment lined cookie sheets. Re-shape dough, flour and roll until all dough is used. 

11.   Decorate cookies with sprinkles or crushed peppermint.  

12.  Bake at 350°F for 8-10 minutes.

Tips:

*When buying sprinkles be aware that different brands have different amounts of fat!  Some sprinkles are just colored sugar and have no fat!  Yet, the traditional “sprinkles” greatly vary on brand, so look close to see what best fits your child’s needs.

*This recipe is meant for any child who needs to supplement their diet with MCT oil, but should be safe for family members without FODs.  My husband and I enjoy a cookie with our son without a tummy ache from MCT oil!  DO NOT USE THIS RECIEPE IF YOUR CHILD HAS MCADD or cannot process medium chain fats!

*If dough is sticking to your rolling pin or counter top then you need to add more flour!  Sprinkle a little flour on the countertop so it is almost invisible, but still feels rough to the touch.  Sprinkle some flour on the dough and on the pin.  As you roll out your dough, flip the dough over every other roll, flouring the top of the dough each time so it doesn’t stick to the countertop when you flip.

Trying to Understand Leg Tiredness

Christopher with his new baby cousin last
Christmas.

I remember when Christopher was small, searching on the Internet for any and everything about LCHADD.  I remember finding several blogs, which I viewed as goldmines because they gave me insight into what life could be and gave me hope for the future.  The one thing I didn’t understand back then is why most people stopped writing when their child entered into elementary school…Or why there were long breaks between entries.  Eight years into Christopher’s life, several years into blogging, I get it: Life happens, Christopher gets sick, exhaustion sets in…and as he gets older I am holding in tension all that I want to share to be honest and vulnerable, with wanting/needing to protect his privacy.  This being said, always feel free to contact me via e-mail if you have specific questions (unless you are a hacker/spamer…please leave me and other moms alone!). 

            Last winter, spring and perhaps even this summer were filled with many mountains and valleys with LCHADD.  During the winter and spring in particular I found myself quite distraught.  Christopher started having leg tiredness consistently for the first time.  He was still able to play baseball, for the most part, but there was a lot of crash and burn moments; where a baseball game one day led to no school for two days.  Christopher’s legs didn’t “hurt.”  He was very clear with me about that.  Rather, his legs were tired, and he was tired after sleeping 11-12 hours at night (yes, we still feed him and don’t let him go longer than 8 hours without eating). 

Even with leg tiredness Christopher was able to play baseball.
We just had to closely monitor him, and encourage him to rest
 after games/practices .

          We tried so many different regimens to help him feel better, so he could go to school.  We tried extra MCT oil before bed, more protein in the middle of the night, only letting him go 4 hours at night without food, and finally adding CoQ10 Lipsomal to his diet.  One morning, when he was not feeling well, we continued to read a book that took place in Chicago in the 1920’s.  In the book there was a side story about a little boy who was sick all the time with leg pain and general malaise.   A close family friend became this little boy’s advocate, carried him to the hospital one night when he was in intense pain, and fought with one of the doctors because she believed the little boy had undiagnosed sickle cell.  As I read this book to Christopher, I lost it.  Tears just started streaming down my face, and Christopher looked up at me and said, “Mom, why are you crying…don’t cry…you’ll make me cry.”  I couldn’t help it, overcome with emotion I said, “I am so sorry your legs are tired Christopher, I want to be able to help you feel better and we are going to do all that we can to figure out why your legs are so tired!”

I think one of the hardest things as an LCHADD mom is seeing my son not feeling well and having no means to make it better…or at times even explain it.  As Christopher’s leg tiredness continued, I decided to take a couple months off from doing pottery so I could go to the Emory library and have some focused energy on his health.  I went into this time with the full understanding that I probably would not “cure” the “tiredness,” but I hoped (and continue to) that research will lead to new questions, new thoughts, and eventually help.  I suppose watching “Lorenzo’s Oil” at the age of ten years old had a profound impact on me.  

            After months of diving into journal articles, asking questions, getting frustrated, and seeking understanding, I found myself trying to come to terms with where research is in the world of LCHADD.  There is so much that doctors don’t know yet, and even as I researched I was struck with how questions always led to more questions and only occasionally are answers discovered.  As a parent, the lack of answers frustrates me, but I was reminded that the same is true for clinicians, who want answers for their patients. 

Christopher got 3rd place at the Pinewood Derby!  It has been
a good social outlet for him, especially when he can't make it
through a full school day and needs to come back home and
rest mid-day.

An insightful doctor once said, “Know that when you are asking questions of clinicians and it appears that we are frustrated with you, we are most often not frustrated that you asked the question…we are upset that we still don’t have an answer…because we want to!”  This was helpful because sometimes when you ask questions, clinicians look at you cross eyed and you are not quite sure why.   When I was a student I developed the belief system that no question was ever dumb, regardless of how the professor made me feel during class.  As a parent, I have carried this belief system into Christopher’s doctor appointments.  I recognize that I am not a medical doctor, but I have spent a lot of time trying to understand LCHADD, helping Christopher with his LCHADD, and that should give me enough credibility to ask and share a great deal of things.  If I feel as though a doctor is dismissing me or frustrated by my questions, I take what that wise doctor shared above to heart…and try to give grace instead of giving in to frustration and uncomfortability.

  Two really helpful events occurred last spring.  First, Christopher started CoQ10 Ubiquinol.  This is often used with kids who have mitochondrial defects and our metabolic dietician recommended it because of its powerful antioxidant properties.  Although the CoQ10 did not help Christopher’s legs feel better overnight, 6 months after starting CoQ10 his leg tiredness has decreased tremendously...AND…last week was the first week in his life that he got a cold and he only missed a half day of school!  These victories are huge!

(While trying to understand why CoQ10 is important and how our cells use energy I came across free organic/bio-chemistry lectures on-line!  You can find Ak lectures at: www.aklectures.com  I felt they gave me a solid foundation in understanding what is going on bio-chemically!)

By August Christopher's leg tiredness had decreased
significantly and he enjoyed a sports birthday party.

            The second really helpful event was attending the “INFORM” conference in the spring.  The conference is geared toward metabolic doctors and dieticians working in the fatty oxidation field all over the world.  The week before the conference I was a little nervous, not knowing how well I would be received as a parent and not clinician, but the experience was absolutely amazing!  For the first time I got to interact, ask questions, and listen to doctors outside of a clinical setting.  I watched as doctors, bio-chemists, and dieticians talked, shared, and argued with each other…without ego… for the pure sake of advancing treatment for kids like Christopher.  It was beautiful to see the behind the scenes support, and then to feel like they valued my input as well.  I got home and told my husband, “I got to rub shoulders with metabolic rock stars!”  He laughed because he knows I am not one to get star struck, but this experience was truly meaningful.
     I don’t know what this year will bring.  I don’t know how I will strike the balance of advocating, caretaking, researcher, dietician and potter…but thanks for continuing on this journey with me, thanks for your patience, and thanks for your thoughts and prayers.

Tradition...Tradition!!!

     The fall and winter are loaded with holidays!  I suppose I was never really awed by this until recently, when I began to mentally list them: Halloween, Fall Festivals, Thanksgiving, and shortly thereafter Christmas and New Year's!  Along with these holidays comes "the way" they are celebrated.  This is the essence of tradition.  
     One of my favorite Christmas traditions growing up was making fried apple pies with my mom on Christmas morning.  Every Christmas morning since I was a senior in High School we would wake up, put on our aprons, flour the counter top and roll out biscuits to make apple pies that we would fry in a pan of oil.  If you have never made fried apple pies before, it is truly a southern art!  If the oil is too hot the pie will burn, if it is not hot enough the pie absorbs the oil...gross...but, if you get the temperature of the oil just right the pie transforms into a crispy scrumptious treat.  This was an important tradition that I carried into my marriage and hoped to continue with my child one day.

One of our favorite fall traditions is apple picking!

     Fried Apple Pies!  Are you trying to calculate how much fat is in one fried apple pie? Don't try, your brain will explode. Our first Christmas together with Christopher I was rolling out dough to make pies when it hit me that this would be a tradition I couldn't share with him, at least not in the way I had experienced it.  I remember saying to my mom, "How could we make 'Christopher-Friendly' fried apple pies?"  What seemed like an oxymoron, led to a great conversation, and starting a new tradition! This was just the first of several traditions that needed to adapt or be left behind.  
     It's hard as a parent to give up the ways we have always done things, and it can challenge our creative prowess to attempt to adapt our traditions to new situations.  I just want to encourage every reader that it can be done!  There are lots of reasons as to why our traditions may need to adapt.  I think the biggest key to creating change is having parents who are on board and are able to get those around them excited about the new way of doing things!  This is not always easy, but it is possible...and perhaps the process can keep us young with new ideas.  If you already have kids and it is an existing tradition that you are trying to change, include your children in the problem solving effort.  If you are needing to change a tradition and it's your first child, like us, including our extended family and friends in the problem solving process has helped us feel loved and supported along the way. Below are ways some of our traditions have metamorphosed:   
     Pumpkin Pie-  Yes, you can make filling for pumpkin pie virtually fat free pretty easily.  You just substitute eggs for egg whites, and evaporated milk for fat-free evaporated milk.  When Christopher was small we just used custard dishes with no crust...and it was still yummy!  As he has gotten older, and can have more fat, we have created a graham cracker crust using "Erewhon" graham crackers (the lowest in fat I have found) and non-fat yogurt. 

Can't beat cookie making!

Sugar Cookies- Soon I will include a post with an amazing sugar cookie recipe made with MCT butter. Once a dear friend from Canada shared with me her recipe for MCT butter, it made the Christmas tradition of sugar cookies possible. Christopher LOVES making sugar cookies with his friends, and everyone can enjoy a cookie or two without worrying about upset tummies from the MCT oil.  
     Pizza-  What kid doesn't look forward to a movie night with pizza and friends?  And how many birthday parties do we go to a year where pizza is the main medium of food!  Pizza is a fun treat, but when you go out or order pizza there is just way too much fat for a kid who can only have 9 grams of fat for the entire day!  This tradition has adapted significantly in our family.  Pizza nights are no longer the "laid back" nights where I get a break from cooking.  Instead, they have become a creative adventure we experience with friends, neighbors and family.  We make our own dough at home, with no oil.  We roll out our own pizzas and then we all get to decorate however we would like!  I have found that this has not only become a fun family tradition but a lot of Christopher's friends enjoy 

Another successful pizza making adventure!

coming over and participating in this process.  Many kids in this day and age have never made their own pizza, so there is a huge since of accomplishment and surprise when they roll out the dough, decorate, and partake!  Christopher loves loading his pizza with veggies and uses non-fat cheese on top...and we can take extra slices of his pizza for him when there are celebrations where this kind of food is present.    

     Halloween-  Halloween and trick or treating is something we only did until I was in third grade, and then we did fall festivals.  I loved dressing up as a kid, it allowed my inner actress to come out and be thoroughly represented.  Christopher did not fall far from the tree!  This year he dressed up as Chewbacca from Star Wars.  He practiced those noises for hours!  (Perhaps we should have encouraged a different character...)  In years past we have not encouraged trick or treating.  Ryan is a teacher at the local school and a lot of his students come by our house, so Christopher was very content to dress up and pass out candy.  This seemed perfect because then we didn't have to go through the process of sorting out candy, and belabor what he can and can't have.  This year was different. Christopher really wanted to go trick or treating.  We talked about the fact that there would be a lot of things he couldn't consume, but he still wanted to go, so we thought we would let him try.  He and his best friend from school, Ireon, dressed up and we all went out together.  This whole experience was heart touching, and believe me I never thought Halloween would feel sentimental.  I had three neighborhood families contact me to make sure they had treats that Christopher could have, and then the evening of Halloween when I took Christopher 

Look at all of their Halloween booty!

and Ireon out, they had a ball!  After the first house Christopher was so excited, "Mom!  I can have everything that they gave me!"  Then at the second house he traded with Ireon something he couldn't have.  Then at the third house when a neighbor tried to give him chocolate, his friend Ireon spoke up for him and said, "He can't have chocolate, he is allergic."  The neighbor just smiled and asked Christopher, "What can you have sweetie?"  To watch neighbors and his peers love him in this way meant so much! 

     Christmas Day-  Do you remember as a kid waking up Christmas morning and dragging your parents out of bed, going to the Christmas tree and opening presents first thing?!  We wanted Christopher to have this experience too, but he has to fuel up!  At first I was really frustrated at the fact that his LCHADD had to take priority in his life this day too...why can't one day out of the year he just not have to think about "fueling up"?  I think we all have those moments where we just feel like it is not "fair" and wish we could do things the way we have always done them .  Yet, I am continually reminded that the more I am able to embrace our new routines and traditions the easier it is for Christopher...and for him these routines are nothing other than "normal".  On Christmas morning our routine is to give Christopher Lipistart right when he wakes up so he has some immediate

Dad, Christopher and Uncle Joey enjoying breakfast!

fuel.  Then we let him open a couple of presents from Santa, make a family breakfast of apple pies and eggs, all eat breakfast together and then open presents together as a family.  I love it, and have really appreciated this adaption.  It allows our Christmas morning to go at a slower pace, and really enjoy each others presence.
     Fried Apples Pies-  Did you notice I said apple pies in the above paragraph?  Yes! Upon feeling defeated about our Fried Apple Pie tradition, my mom suggest that we try baking some apple pies.  Not only did it work, but I have found the pies just as tasty! Christopher loves the baked apple pies and now can participate in the tradition!  Truth be told my mom and I still fry a couple for ourselves for old times sake, but honestly I love the baked pies!
     Traditions are so important, not only to kids but their parents too!  I find so much hope in knowing that adaptions can allow us to participate in the traditions that are most important to us.  G.K. Chesterton put all of this into perspective for me in his selection, "Enjoying Floods and Other Disasters."  In this writing he shares a story about a man who every day struggled to open a drawer in his dresser.  Every day the drawer was jammed and every day he would become more and more frustrated.  Chesterton suggested to his friend that how one views the situation can vitally change one's outlook.  If everyday you get up and you view yourself going to battle against this drawer, of course you will end up angry and frustrated, but if you can wake up and imagine, as you are pulling on the drawer, that you are "tugging a life-boat out of the sea" or "roping a fellow-creature out of an Alpine crevass" then the problem becomes an adventure.  He goes on to say, "An adventure is only an inconvenience rightly considered. An inconvenience is only an adventure wrongly considered." (G.K.Chesterton, "Enjoying Floods and Other Disasters", Spiritual Classics, 303) Chesterton pushed me to view my greatest moments of defeat, frustration and uncertainties as a way to access my ability to be creative.  And when changing a tradition  feels utterly overwhelming, I think about that drawer-and how our kids' situations give us the opportunity to become more creative and adventurous than we ever thought possible.
      

Tapioca Enters Our Life

     I think Christopher was about two years old when it hit me that he had endured oatmeal before bed every night for at least six months.  We went in for his bi-yearly metabolic appointment, where I asked the dietitian for other complex carb ideas for night-time snacks.  She suggested potatoes, rice and "of course" tapioca.  
     Tapioca?  At the age of thirty I had heard of tapioca but never tried it.  All of my knowledge of this substance came from the movie "Benny and Joon."  Joon and Sam go to their local diner for a late night snack and Joon orders this white creamy pudding. Before eating it she takes out the "shriveled grapes" and has a long conversation about why raisins are disturbing...the thought still makes me giggle!  I wrote down all of the dietitian's carb ideas and went home to see if I could find a low-fat/fat-free recipe for tapioca.

     Okay, so for any of you that are totally lost right now and don't understand why in the world I am carb-crazy at night with Christopher, let me explain.  Many dietitians encourage their LCHADD patients to have a complex carbohydrate before bed when they are starting to go longer than 3-4 hours at night without food.  Christopher started this around age one and a half.  By age three we were encouraged to give Christopher a high carbohydrate snack and his Lipistart with raw cornstarch before he went to bed.  The idea is that the extra carbs will store in the liver and slowly release throughout the night to provide him energy, thus preventing fatty acid oxidation.  At age 7 we have switched things up a bit, with the same basic principle.  We give him a high complex carbohydrate snack before bed and then 3 hours into his sleep give him his Lipistart with cornstarch.  This is so that when he is healthy he is not going longer than 8 hours without food.  Back to my story...
    So I went on-line in search of a recipe...and to my surprise tapioca is typically made with yolks, and often consists of half and half or whole milk!  It is one thing to substitute an egg white here or there to reduce fat in recipes, but when I started thinking about how to make tapioca "Christopher Friendly" I felt like it would be equivalent to turning chocolate fudge or butter into something fat- free!
     Then I read somewhere about someone using coconut milk instead of real milk in their tapioca.  I knew that using full fat coconut milk was not an option, nor using only coconut milk because the Tapioca would still be too high in fat, but I thought some substitution might bring back the creaminess and the flavor.  All of this went into producing the recipe below! 
   A couple clarifications:  First, if you have MCADD, DO NOT USE THIS RECIPE!  Coconut milk is comprised of 60-80% medium chain fats which your body cannot process well.  For the LCHADD, VLCADD or TFP child this recipe should be perfect!  Check with your dietitian, about  how they would like you to calculate fat grams for this recipe.  Our dietitian felt that there was such a little amount of long chain fats in a serving that we did not need to count it toward his daily allotted amount of long-chain fats.  That being said, if you use Trader Joe's light coconut milk with this reciepe at 8grms of fat per 2/3 cup, you are at about 3.2 grms of fat for the entire recipe or 0.6 grams per 3/4 cup of Tapioca.  Again, talk with your dietitian about how they would like you to calculate fat.  And don't shy away from having a bowl yourself!  I love this stuff, even with the "shriveled grapes"!!!

                      Tapioca

 Ingredients:

• 2 1/3 cups Fat Free milk
• 2/3 cup low fat coconut milk (or “Light” coconut milk)
• 1/2 cup pearled tapioca (not quick cooking)
• 1/4 cup sugar in the raw
• 1/4 teaspoon sea salt
• 3 egg whites
• 1 teaspoon vanilla extract or 1/2 tsp almond extract
• 1/4 cup raisins

 Directions:

1. Soak ½ cup tapioca in 2 cups of water overnight or for at least 5 hours.  Drain off excess water and continue with recipe.
2. Stir together milk, coconut milk, tapioca, sugar, and salt in a medium saucepan. Bring the mixture to a boil over medium heat, stirring constantly. Reduce heat to low.  Cook and stir 5 minutes longer.
3. Whisk 1 cup of the hot milk mixture into the beaten egg whites, 2 tablespoons at a time until incorporated. Stir the egg mixture back into the tapioca until well mixed. Bring the pudding to a gentle simmer over medium-low heat; cook and stir 2 minutes longer until the pudding becomes thick enough to evenly coat the back of a metal spoon.
4. Remove from heat and stir in vanilla/almond extract and raisins. Pudding can be served hot or chilled. 

Makes Approximately five 3/4 cup servings.

* For a twist and to cut down on the sugar you can use :1/8 cup sugar in raw, 67g cup banana puree and 67g mango puree