Boston/Clinic Appt.

The old well at UNC

Over the past few days Oliver has had more seizures. They tend to start with him "dazing off" and then end with him crying and seeming either in pain and/or disoriented. One of these happened today when I was changing his diaper and his crying afterward broke my heart. Seizures can be so hard to watch, particularly when he seems upset. This seizure is still mild compared to the other ones that sent us to UNC but, we were so hoping his seizures would stop on the increased meds.

I called the doc at UNC to discuss these events and to tell him that the increased amounts of Tegretol were causing Oliver to be very sleepy and act tipsy/clumsy. The dr. said we need to switch meds because it wasn't controlling the seizures very well and it seemed to be causing toxicity (those nasty side effects). So we are on to trying a new med, Trileptal. We are praying and hoping this one will work :)

Now to Boston...

Today I got an appointment (Oct. 12th), for Oliver, to see one of the leading TSC experts in the world. Dr. Elizabeth Theile is at Mass General Hospital in Boston where she is the director of the clinic. I already feel so relieved to know we are going to see someone who really knows about Oliver's condition and the treatment options that might be available. When I called to make the appt. the patient coordinator said, "this Thursday the TS Team will talk about Oliver's situation and decide if they want to do any other tests while he is here." I thought, "A team, that is exactly what I think we need!" One of the main reasons I wanted to go to Boston is because of their inter-disciplinary team of over 20 specialists. I am convinced that a collaborative model is the way to go with Oliver's health care. This clinic also is involved in clinical trials, cutting-edge neurosurgery, and special MRI techniques for people with TSC. Consistently, parents of kids with TSC, that I have emailed or called, have said...you won't regret going to a clinic and we wish we had went sooner. We're going to take their advice and try to be as proactive as possible.