The Diagnosis - Infantile Spasms

Family & Friends,

We've had a number of medical challenges with Gracie recently. The diagnosis of epilepsy, a clinical diagnosis of Sotos Syndrome (we are still awaiting the genetic tests to come back for confirmation), and our latest stay in the hospital has given us the diagnosis of Infantile Spasms. This is a seizure disorder if left unchecked can cause permanent brain damage and even death. We feel very fortunate to have caught this very early...we believe on day 2. We are treating this very aggressively with a steroid injection therapy. Our pediatric neurologist has indicated this drug is successful about 80% of the time. We aren't quite sure of the definition of successful at this point. We meet with the neurologist again and will get more information. I'm giving Gracie injections twice a day for starters, then it tapers down to once a day and then once every other day. This is a 12 week course of meds. The meds are very strong and can cause high blood pressure, liver damage, a compromised immune system, and stomach issues. Therefore we have appointments twice a week to check Gracies stats...chemistry, blood pressure, weight, etc. We also have her taking a number of other meds to assist with all of this. Gracie is also starting to puff up a bit from the steroids. We're told it will get worse before it gets better.

We have created this blogsite to keep family and friends updated on Gracie's progress. We ask for your prayers that the treatment plan be a success. Gracie's been a trooper throughout. She now preps herself for the injections by sticking her thumb in her mouth, grabbing her blanket, and wincing in preparation. Mommy still cries after each one, but I'm getting braver too! Daddy will take his turn with the injections once mommy has it down to a science and can teach him.

Gracie is much more restless and irritable, I'm told this is a side effect of the steroids. Her tummy gives her more trouble, and she has quite the appetite. Her smiles are a little harder to come by, but she still has them. She still has her sense of humor intact as well. Today I found her on the floor, laying perfectly still, eyes closed, holding up a bottle of water that was slowly drip, drip, dripping on her face. When I asked her what she was doing, I was rewarded with a huge smile. "Just playing, Mom!"

I'm off work to be with Gracie for a while. We'll see how it goes and if she starts to feel better once we reduce the steroid treatment, then she will go back to daycare. We're just taking it a day at a time.

We appreciate all of the good wishes we have received and appreciate all of the prayers - please keep them coming. We need them to beat this and our plan IS to beat this.

All our love,
Lisa, Jeff, and Gracie