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.