Against All Odds: Beating an unknown disease

  • Published
  • By Lt. Col. David Mason
  • 490th Missile Squadron commander
MALMSTROM AIR FORCE BASE, Mont. --  It has taken me more than 10 years to find the courage and inner strength to write this article - an article I truly hope will translate into something educational and useful to all parents and families reading this ... a subject I rarely talk about these days.
 
You see, this story is about my son, Jefferson, a very courageous 12 year old who beat the odds and overcame a critical medical condition at the young age of 2. Ten years ago, Jefferson was diagnosed with Polyarteritis Nodosa, which is a type of vasculitis disease that affects the small and medium size arteries throughout the body, causing the body's immune system to turn on itself and then try and heal. This condition has about a 95 percent fatality rate in adults, but less so in children because, for some unknown medical reason, they have the ability to heal. 

I remember when this all started as if it were yesterday. Jefferson's symptoms began like an ordinary virus: fever, sore throat and crying. His low- to mid-grade fevers occurred mostly at night and at the time, that routine did not register with me and my wife as anything out of the ordinary. We treated the symptoms with over-the-counter Tylenol, which seemed to work and made him better during the day. 

However, over the span of a week, Jefferson's fevers worsened and started fluctuating between 104 and 108 degrees. I had never known anyone to endure these types of high fevers and still don't to this day. Two weeks went by with no end to the high fevers and the ice baths we had been directed to give him to help control and lower the fevers. Trips back and forth to the doctor confirmed some sort of viral infection, but no clear answer on the type of virus he had. After two weeks, his condition got even worse. 

We noticed Jefferson developed a slight limp in his walk, but figured it was nothing more than him bumping his leg while playing. Not in my wildest imagination would I figure the high-grade fevers and swollen knee joint were related. What we found interesting about his condition at the time was during the day, Jefferson was full of energy. His fevers would normally drop to between 101 and 102 degrees, which were in range of what I thought was "normal' for a sick child. But at night, his temperatures rose as though someone had changed the heat settings on a gas stove from low to medium high. 

After suspecting there was something else going on with him that was more serious, we took Jefferson back to the doctor and demanded he be admitted to the hospital for closer observation and a more accurate diagnosis. His condition was finally upgraded to what was thought to be Fifth Disease, a viral infection that's prevalent in younger children that produces a red rash on the face and later spreads to the trunk, arms and legs. Since there were a couple of kids at his day care center out sick with this illness, we took that as the correct diagnosis. We really didn't know the onset of his sickness, we waited and continued to follow the prescription of Tylenol and rest. However, one small but important fact about that diagnosis was Jefferson never had a rash, only similar symptoms of this disease. 

Within a couple of days of release from the hospital, Jefferson's condition worsened. I remember being home one day and getting him dressed so I could make a quick trip by the squadron to check my alert schedule. 

As I walked down the stairs in the house, I turned around to check on my son. He would normally beat me down the stairs and wait for me at the door. This day, he never made that trip down the stairs because he was in too much pain to walk down them. As I reached for his hand to guide him down, he began to wince and started favoring his right leg. I knew right then that something was terribly wrong and an immediate trip back to the hospital was in order. There had to be something we were not seeing. 

The pediatrician at the hospital agreed and a trip to Children's Hospital in Denver was arranged. If you ever want to witness an environment that will humble you like no other and make you totally realize just how precious life is, walk the halls of a children's hospital. Just the sight of critically ill children, some younger than my son and some older, put everything in proper perspective for us on our roles as responsible and loving parents. The parents that were there, loved their children just as much as we loved Jefferson. The fact that the future was so uncertain for all of the children being treated made us realize life could be taken away from our precious children at any time. I remember right after Jefferson was admitted, the receptionist offered us a room at the Ronald McDonald House in downtown Denver. We declined since we were both employed and could afford to pay for lodging. I also didn't want to admit this offer could be a sign of how critically ill our child really was. 

Ladies and gentlemen, let me tell you that after Jefferson was admitted I had never seen someone poked and X-rayed so much before in my life. Everything from MRIs to CAT scans to body imaging. Imagine a 2-year-old child going through this. Considering the progressive worsening of the symptoms, Jefferson was tested for every medical condition known to mankind, or at least it seemed that way to a concerned mom and dad. Fluid was drained from his swollen knee and elbow and tested. After all of the tests and the pain "Lil' man" was enduring, absolutely nothing was found. Nothing. 

Furious doesn't adequately describe how I felt after the doctor informed us of the non-findings. Surely modern medical technology could figure this out. My son was placed through a torturous series of tess and absolutely nothing was found!
Seven pediatric specialists were baffled and so were we. Thoughts of changing hospitals and getting other opinions crossed our minds but there was no way we wanted to put Jefferson through those tests again, although we wanted immediate answers to what was causing his sickness. 

After a month and a half, seven specialists and three hospital stays, Jefferson was diagnosed with Polyarteritis Nodosa (PAN). The three compelling factors that helped draw that diagnosis were the swollen knee, elbow and the high fevers. 

At the time, there was no test for PAN and doctors had to perform the torturous series of tests to eliminate every other medical condition with similar symptoms. Unseen were a swollen coronary and kidney artery. This helped explain the high fevers. Jefferson's platelet count almost reached one million. The normal level is significantly lower than that. His sedimentation rate, which is a blood test used to detect and monitor inflammation in the body, confirmed Jefferson had internal inflammation. To this day, know one knows what causes PAN and the only diagnosis for this disease is performed through clinical findings. At the time, one of Jefferson's rheumatologists had only treated 10 cases like his nationwide and he was the resident expert in treating this condition in children. 

After months of taking steroids and immunosuppressants (suppresses and controls the immune system), Jefferson's medical condition returned to normal. Jefferson beat the odds back then and 10 years later, he acts as though he was never sick.
There is no cure for PAN and the disease has a very high fatality rate in adults. The long-term outlook for adults with this condition, if left untreated, is death - usually within weeks or a few months. 

After several years of follow-up tests, Jefferson has a clean bill of health and there are no indications he ever had this disease. The swollen arteries have been back to normal size now for several years and there is no longer the fear of those arteries developing aneurysms. 

Was it the tests, medicine or the fact this disease is curable in children? I don't know. What I do know after several trips to the Threshing Floor for prayer, I witnessed a modern-day miracle. There was nothing we did extraordinary as parents and getting him to proper medical authorities doesn't count as that in my book. The medical experts treated Jefferson's condition and our God Almighty has kept him healthy ever since. Just seeing him ride his bicycle or watching him run up and down the street with his friends is a priceless sight to see! 

The future is very promising for this once critically ill child. He's been healthy now for 10 years and for each of those years, my confidence in him being forever cured has grown. Jefferson endured the pain and misery at such an early age and showed me what true strength and courage are all about. My "Lil' man" came through like a true leader ... my hero.