Our Prayers Have Been Answered!

Gracie had her EEG this morning and as always hated every minute of it. I was told they always know when Gracie has her EEG's by the screams and cries down the hall. She is heard!!! We were ecstatic when Gracie's pediatric neurologist shared the news that the Infantile Spasms are GONE!!!!! Jeff, Gracie's physician, and I all cheered and Gracie beamed from ear to ear. We will continue to keep Gracie on the full dose of Prednisolone for one week, then will slowly decrease the amount over the next ten weeks. We also will continue to keep her on Vigabatrin and once she is off the Prednisolone, we will begin decreasing the Vigabatrin. Our pediatric neurologist feels that it may have been the combination of Prednisolone and Vigabatrin that has brought us to this desired result.

Gracie's EEG continues to show a slower activity than is normal, this is representative of her learning and motor skill delays. We will do another EEG in 6 months to check the progress of this. With Gracie's diagnosis of Sotos Syndrome, we are not surprised by this slower activity. We are encouraged by Gracie's continued progress with her motor skills and cognitive skills. When other children have I.S., the norm is to lose skills, our determined Gracie gained many skills and continues to do so.

Gracie is at high risk for the Infantile Spasms to return, so we must monitor her closely. If we even see one spasm it warrants a call to her pediatric neurologist and treatment to begin again. We hope and pray this doesn't happen, but if it does, now we know what treatment she responds to.

There is much excitement in our home tonight, as well as a feeling of thanks to God who has seen us through to this healing and to all of our family and friends (as well as people we don't even know) who have been praying for our little cherub. Our prayers have been answered and we are thankful!

Love,
Lisa, Jeff, and Gracie