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dawnjyc 10-01-2011 01:38 PM

My 16 yr old son and q to ask doctor
Hello all. I find myself on this board after an incidental finding on CT scan. My 16 year old son has been suffering from what I dub as a “mystery illness” since he was 5 years old.

A little back story – his joints if bumped or used a lot in say like running would swell up like balloons. He is an athlete so this has complicated things to a great deal. He has had every test imaginable from JRA to Lupus to other Arthritis type diseases. Joints affected have been knees, ankles, elbows, wrists and hips. He has had MRI’s and CT scans on each of these areas. And its always unfounded even with the visible swelling.

What I always found odd was when this would happen he would also get sick. Fever, stomach issues, extreme fatigue. His last blood test was two years ago. As I lost my job and have no more health insurance and the last blood tests had only shown high white blood cell counts. They thought at one time he had mono but it was negative. So the elevated WBC two years ago was associated with infection.

Three years ago, I found an enlarged lymph node on his neck. His doc passed it off as nothing more than being sick and sent me on my way. But the lymph node never went away. Never went down and seemed to never get larger. Just there. I kept taking him back and they kept telling me it was nothing to worry about. Even sort of made me feel like I was crazy.

Then a teaching hospital finally diagnosed his condition as Teen onset Fibromyalgia. Told me to keep him in sports and activities as this would help his muscles and bones and eventually could even grow out of it. I sort of felt like it was a passed off diagnosis because they were unable to find the real source but accepted it and we moved on.

Several days ago my son was horseplaying with some friends and fell hitting his neck. The entire right side of his neck swelled up like a balloon, much like the other joints had done previously. We rushed him to the ER in the middle of the night and they did a CT scan on him with no resolution. They again found no reason for the swelling but did find the enlarged lymph node on his neck. The ER doc said he was concerned because it went deep into his neck . They put him on an antibiotic and told me to make an appt with his GP immediately.

It has been 3 days and the lymph node has not gone down – well it never has. Also, he has been sleeping the days away again and is ill like he always did when swellings occurred. Also, a couple days before thsi all happened he complained that he was itchy on the inside of his body.

So I have an appt with his GP this week. But am left with so many questions, like could this thing have grown on this inside of his neck over the years so that when I or his docs felt it I wouldn’t have noticed it? Also, while this node if very hard it is somewhat moveable…is this a good thing?
Well I did what no worried mom should do and I did some internet research. I discovered article after article that arthritis type symptoms can some times be misdiagnosed in non-hodgkins lymphoma. So I am now sick with worry.
How should I prepare myself for whats next? What questions are good to ask? And what tests should I ask to be run if any. Am I over concerned – I sort of hope so.

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