Katy Dickinson

Headache Update

Thanks to everyone who has been kind enough to ask after the health of my 16-year-old son Paul. There is good news, and bad news. The good news is that the pathology (study and diagnosis of the blood and tissue samples taken from Paul) is complete: Paul's brain lesions are not cancerous, or caused by an infectious or autoimmune process. We were very happy to hear that! In fact, the Neurosurgeon does not think that the brain masses are related to Paul's severe headaches. Which brings us to the bad news. Since last week, we have been working with a Neurologist who is still trying to figure out what to do about the headaches that started our whole medical adventure.

We have tried seven drugs in the last two months, some of them twice. I now have a chart with the name of each drug down the Y-axis and the following column headers across the X-axis: Pain, Nausea/Queasiness, Dizzyness, Memory Loss & Fuzzy Thinking, Tippyness/Falling, Sensitivity to Sound-Movement-Heat/Cold, and Sleep. We are keeping track of Paul's response to each drug but have yet to find one that kills the pain without making him nonfunctional. I begin to suspect that this will take a long time to work through.

I think we are getting very good medical care. However, I also think we are creeping toward the edge of medical knowledge. For example, the MRI (scan of Paul's brain) done at our regular medical clinic had much less detail and resolution than the extensive set of scans done a few days later by Lucille Packard Children's Hospital (LPCH). Even I could tell the difference looking at the images with Paul's Neurosurgeon before the surgery. The first MRI images showed one fuzzy brain lesion, the second from LPCH showed two lesions very clearly. Talking with the LPCH technician who was getting Paul ready to scan again after the biopsy surgery, I learned that an even more advanced MRI machine will come on line there soon. It seems to me that as medical technology advances, body tissue scans are showing more and more detail and there is very little "normal" baseline to compare them to. Even if there was a "normal" baseline, it would probably be for adults, not children, because of laws and regulations quite rightly protecting children from medical testing.

The surgery scar on Paul's neck is healing well. He is back in school but excused from Physical Education (PE) for the rest of this semester. Your prayers for strength of body, mind, and spirit for Paul and our family are very welcome indeed. Thank you.

Paul just told me that light exercise and frozen grape popsicles made his headache better. Have to add those to my chart...

Posted at 06:23PM Feb 23, 2009 by katysblog in Home & Family  |  Comments[2]