April 4, 2010 "WTF?"

It has been about a month since Porter had his follow-up with the neurologist. It was an interesting visit. Clint took him up to Primary Childrens. They met with a neurologist to go over the results of Porter’s recent EEG and MRI. We had never met with this particular doctor before, so all he knew of Porter was what was in his medical records and what he was seeing for the first time that day. I’m not sure that we were expecting what the doctor had to say that day, in fact I’m pretty sure we weren’t expecting it at all.

He told us that Porter’s EEG and MRI were normal. At first we thought maybe that his MRI was normal for him, as compared to previous MRIs. The doctor proceeded by explaining that Porter’s brain was perfectly healthy and normal as was the case on his previous MRI that was done 5-6 years ago. WTF? Porter’s brain is normal? The doctor then said, “I don’t think Porter has cerebral palsy.” That really caught Porter’s attention. “I think he might have dystonia.” Seriously? After all these years, doctor’s appointments and focus on cerebral palsy? Really?

Those of you who know Porter knows he has difficulties with his mouth and has since birth. The doctor said that Porter’s abnormally tight jaw was nothing that he has seen in any other cerebral palsy patient. He suggested Porter start a medication that Parkinsons patients take, one that might help relax his muscles. The neurologist was also going to consult with an ENT for further ideas on what might really might be going on and what might be done about it.

Porter and Clint met me for lunch and related the results from the appointment. Porter was confused, a little disbelieving, “Do I really not have cerebral palsy? Really?” Then he got a little angry, “Those doctors are stupid! How come they didn’t know this? I’m 10 years old and they didn’t figure it out yet?” Then, the action that hurt my heart the most, Porter set his head on the table and sobbed, quietly and sadly. His little shoulders shook and big tears dropped from his eyes. I’m sure he was feeling a mixture of emotions, but mostly uncertainty and fear.

He looked up at me and said, “What if it isn’t dystonia either? Then what?” I answered,“Then we keep searching until we figure it out.” “Mom, we’ll never give up?” “Never.”