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Billy's Story

    My name is Karen, my son Billy is 12 and was diagnosed with Sjogren's in September of 1998.  Lynne and I discussed the possibility of Billy telling his own story, but he is busy being 12, thank goodness!!  So I will tell his story...

    Billy called from a friends house on Saturday morning, May 2, 1998.  He had stayed overnight, and he was complaining of a terrible headache, chills, and that the left side of his face was very swollen.  He immediately came home and by the looks of him, I was scared to death.  Off we went to the pediatricians office.  First the nurse thought mumps, but Billy was immunized, so we thought how could that be...When the doctor came in, she immediately said parotitis.  So we were sent home with antibiotics...His fatigue and fever lasted three days.  He could barely open his mouth to eat, and was tired out when he did try to eat.  What a nightmare! He was so sick and it was very frightening.

 
    He started to get better.   I was feeling better as well.  Then on Mother's Day, eight days later, he woke up and found the left side of his face swollen again.  This time, after talking to his doctor we went to Childrens Hospital.  They treated Billy with intravenous antibiotics, which was the first time he ever experienced anything like that.  He was so scared.  They sent us on our way and told us that Billy had parotitis and that it was fairly common, and they would see this about 5 times a week.  So at that time we thought that everything was under control and he would be better in about a week or so.

 
    Then his swelling was up and down.  In the morning it would really be down and then by the time he would get home from school, it would be big again.  Not as large as it was in the beginning but larger than it was in the morning.  This went on for three weeks.  By the end of May it was totally gone.  I thought that was the end of it until....

 
    June 9th, Billy was at the movies with friends and came home at 3:15 in the afternoon.  The left side was inflamed again, he was fatigued and had a fever.  All he wanted to do was go to bed.  Off we went to the doctors and he sent us to the ENT.  They saw Billy right away and he thought it was an infection as well.  He put Billy on antibiotics and sent us on our way, with an appointment for the next day.  We saw the doctor the next day and that's when the right parotid gland started to enlarge.  What a horrible feeling I had.  I was trying to be strong for Billy but really wasn't doing a very good job of it.   I think he could see how frightened I was.

 
    After that, we spent many hours at different doctors offices.  Most of Billy's summer was spent going from doctor to doctor and feeling very sick.  He was a real trooper but we had many days and weeks of tears, trying to understand what was happening to him.  We went to the dentist, the oral surgeon, Billy had a CT Scan, a needle biopsy of the parotid gland, and lots of blood work.

    I was very insistent that we get to the bottom of this since this was the second time, and also because the right gland started to enlarge.  Billy's face seemed to get puffy and this just wasn't going away.  Finally, the ENT ordered the blood work and sure enough the blood work "strongly suggested" an auto immune disease.  We had to wait until September 15th before we could get into the Rheumatologist.  

    I was crazy.  The fear of the unknown is the worst.  I was on the computer for hours trying to get any information on this Sjogren's Syndrome.  That was probably a mistake, not knowing a thing about auto immune diseases.  Finally, the Rheumatologist confirmed the ENT's diagnoses, Sjogren's Syndrome.

 
    It was such a nightmare, my 12 year old son, how could this be.  Billy really doesn't understand all of this.  He realizes that when he is tired he has to rest.  I make sure he gets his proper sleep at night and he usually doesn't give me a hard time.

     Billy has had only two flares, May and July.  He has had periods of tiredness and his parotids are still swollen, not like they were when he had a flare of course, but he looks a little puffy at the glands all of the time.  His last doctor appointment he received a great report.  He checked out okay with the physical, we go back to see his Rheumatologist in July.

 
    So many questions.  Before this Billy hadn't had a sick visit to the doctor in over two years.  There is no history of auto immune in my family.  His father is adopted so we really aren't sure about that but his father is healthy.  Billy will be starting with braces in March, which is a concern.  We'll take it one day at a time.

 
    The doctors think possibly hormones could be the cause, and that maybe this will go away after adolescence...wouldn't that be a blessing!!!  As of now, Billy is not on any medications.  Sometimes I wonder if maybe he should be, to slow down the progression of this disease.

 
Billy's Mom

Story Copyright © 1999-2007 Karen

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