Children and Lyme Disease – Part 2 – When Lyme Lingers

Yesterday was my middle son’s follow up.  Just six weeks ago I had hauled him into our physician’s office.  He was exhausted and tired of feeling sick. His joints ached; acid reflux plagued him.  He was having a hard time concentrating.  Academic tasks that were once easy now caused frustration.  His ears were ringing; his eyes were bothered by the light.  He was ornery, and my heart was aching.  Seventeen vials of blood were taken.  A protocol was given.  We waited for the tests to show us where we were on this Lyme journey.  Some good news was to be had, some bad.  New discoveries were made, old discoveries still reared their ugly head.

My doctor spent forty-five minutes talking to us, listening to us, formulating a new plan.  After our visit concluded I sent my son into the waiting room as I worked with the nurse to collect the recommended supplements.  I didn’t want him to hear how much the bill would be.  He didn’t need to know.  The nurse tallied, then looked at me out of the corner of her eye.  “I know, I know.  Being sick isn’t cheap.  Just tell me how much,” I gently told her.  As my pen moved across my check, I felt a feeling of deja vu come over me.  “This was me a few years ago,” I thought.

My son and I walked out the door, and I tried to put a good spin on things.  “We’re getting more pieces of the puzzle.  We’re moving in the right direction.  Good things are gonna happen.  I’m so thankful for our doctor; she really cares about you.  I love you bud!”  I smiled at him, put my arm around him, and drew him close.  I knew all of what he had heard today weighed heavy on his heart.

Upon arriving home, my son went up to his room to rest (he’s been dealing with some virus that’s been circulating).  I went into the kitchen and lined up the supplements.  I read over my doctor’s notes.  I realized that I neglected to get one of the required items.  My two hands gripped the countertop, and I hung my head.  My eyes began to well up.  How long was this journey going to be?  Will he ever get better?  Will he be struggling with this for the rest of his life?  He’s only fourteen.  Where will the money come from?  There are moments where strength is fleeting and weakness dominates.   There are moments when a parent realizes that dealing with a child’s illness is far more gut-wrenching than dealing with your own.

This is the raw emotion a parent of a child who has chronic Lyme Disease feels.  Some of you may know this feeling.  Some of you have children who are afflicted in other ways.  There is a feeling of helplessness and a deep desire to try your best to make everything better.  It can be incredibly frustrating.

After living through my child-bearing years with undiagnosed Lyme Disease, it was no surprise that two of my three children tested positive for antibodies at a young age.  Many have long suspected that an infected mother can in fact pass the disease along to her children in utero.  Research is beginning to validate those beliefs.

For my middle son, Lyme Disease was something that he was born with.  He didn’t contract it from a tick, but from me.  As a result, no one knew what was going on inside of him.  There was something silently at work within him.  Something that provided no indication of its presence.  Something was stealthfully at work burrowing deep within him.  This was something no child could vocalize and no mother could know.  For the longest time I had no reason to think that there was anything wrong with my son.  I was struggling with my own health issues, and was frankly focused on keeping myself alive.

In hind site, I clearly remember when this disease began to rear its ugly head.  My son was around eight years old.  He was normally active, athletic, and always hungry.  He then came down with what appeared to be the flu.  It was flu season, so I didn’t think much of it.  He rested, and I cared for him knowing that the flu and its effects could last for a week or so. But, after ten days, I found my son still lying lifelessly on my living room sofa.   Barely eating, hardly moving, he ached and groaned.  I took him to the doctor who in turn reprimanded me for not bringing him in sooner to receive flu medication.  We came back home having received no help or advice other than to let it ride its course.

Two weeks passed.  I asked several friends to pray because I knew in my momma gut that something was not right.  My son looked up at me and said (I’ll never forget the exact words), “Mommy, I feel like something has taken over my body and is running all over.  I can’t even move.”

We immediately went back to the pediatrician, requesting to see a different doctor within the practice.  The doctor examined my son and took his history.  She did not think that this was a case of the flu.  She sent us for some blood work, and prescribed an antibiotic.  As I was waiting at the pharmacy to pick up the prescription, I received a call from the pediatrician.  She was ordering a change to the medication.  She wanted me to stay in touch and bring my son in immediately if there was no improvement within the next day.  We began the medication immediately, and within a day, I began to see some signs of life in my son.  Within a week he was eating and drinking normally, and within two weeks, he was virtually back to normal.  The blood work did indicate that there was something going on, but that was about the extent of what we would know.

Although doctors and the medical community do not acknowledge a momma’s gut and heart, I know now that this episode was the beginning of my son’s visable struggle with Lyme Disease.

At my son’s next physical, I requested that a test for Lyme Disease be run.  At this point in my life, I was still undiagnosed myself and not as informed about the diagnostic side of Lyme Disease as I am now.  As was customary, our pediatrician would only call me if the results of the blood work were cause for concern.  I never received a phone call, but something within me, the Lord, no doubt, caused me to call up the doctor’s office and request that copies of my son’s blood work be sent to me.  They were.  The results surprised me, and the ensuing conversation with our pediatrician would infuriate me.

I’ll hit the pause button here, and come back to finish the story in my next post.

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