Update on Billy!!
This past week we have continued to seek answers on why Billy suddenly out of no where had a "status seizure" three weeks ago. Some times I feel like I am banging my head against a wall. On Tuesday we saw the Developmntal Pediatrician from Charlotsville. He said he could only speculate ( isn't this what all doctors do any way?). His speculation was......... Are you ready........ that it was just time. Well ,Hello, time???????? I am asuming that he meant that because Billy has only had small seizures for so long that it had been building up. What ever , scratch that visit. We had never seen this doctor before, we always see his partner which we will continue to do in the future.
So................... on Thursday we saw the Neurologist Dr. Taft (he is the best) from Charlotville. He has been Billy's Neurologist since he was a baby. He is the one that finally agreed to take him off Phenabarbatal years ago.
So here we go...... His very educated speculation............
Since Billy is in Tanner stage IV puberty at ten years old (very early) and he is high on the Cerebral Palsy growth chart and because he had a status seizure all of the sudden, he thinks there might be something going on with his pituitary. He wants to rule out a pituitary tumor. He does not think this is the case but wants to rule it out. Because Billy has global brain damage he may just have damage to the pituitary. So our next step is to see an endocronologist. This doctor will evaluate him and check his hormone levels. If his levels are extremely elevated they will do a CT scan with contrast to check for a tumor. Finally we are getting some where!!!
Are we worried???? No!!!! Billy is one tough cookie. I really feel like we will be dealing with damage not a tumor. In all reality this has been a blessing. The quicker Billy gets through Puberty the quicker he stops growing. The smaller Billy is the easier his care will be. Dad is 6ft 4in. If Billy gets this tall I am going to have to ride in the chair and he is going to have to push,lol.
So for now we are taking it one step at a time. We may never find out what caused all of this. But I can tell you that I refuse to believe that this is the begining of a downward spiral for Billy. If anything he has once again gotten us on our toes , things were just getting to boring and he wanted to change them up again.
