Mac Update

Around the middle of April we noticed that McLean was making a few funny movements that we were not too sure about, so we kept an eye on them. A prompt visit to the doctor concluded that indeed McLean was having seizures again, so off to Children's Hospital we went. After examination and an EEG, the neurologist confirmed what we had suspected, indeed it was seizures. As it turns out Mac was having what they call "infantile spasms" which is one of the most severe forms of epilepsy.

From our first visit at Children's Hospital we knew that seizures of some sort were quite likely in Mac's future, so it was not a huge surprise to us. This visit to the hospital led us to acquiring a new neurologist who is the leading expert in epilepsy and seizure disorders, Dr. Mary Connolly. So, that part is great. The other good news is that children usually outgrow these type of seizures within their first year. Mac is now on a new medicine, Vigabatrin, and we also signed up to be part of a double blind study to test the effects of another drug, flunarizine, on the developmental outcome of children who have had infantile spasms. We do not know if we are indeed getting the drug or the placebo, but we figure it is worth trying, as we will get a lot more follow up, examinations and intervention in being part of the study.

This last Friday we went back to Children's Hospital again for a follow up EEG (6 hours long!) and it was confirmed that there are indeed no more seizures and the new drug is working.

These two last visits have been, needless to say, a little stressful. It was wonderful that "G", my Mom, could be there for the first, and that Gran (Spencer's Mom) was there for the second. These two wonderful women, or the "G Force" as we call them, have been a godsend. Through the birth, our first visit to the hospital and now the follow ups they have not missed a beat. I honestly don't know what we would do without them, or all the support we have had from family and friends. Thank you!