What the future holds

When my daughter was about 8 months old, I noticed her repeatedly banging her head into the walker she was playing in. At first I though she was doing this intentionally, as children sometimes do, but then she kept to banging her head even though she was crying.

Over the next couple of weeks, Anna became colicky, something that had never been a problem before. She was less responsive and even stopped sitting up on her own. This, coupled with the clusters of the repetitive, jerky bowing movements, told me that something was very wrong. I took her to the Urgent Care and was quickly referred to a neurologist. The doctor scheduled her for an EEG right away. I should have known by the speed with which the tests were scheduled that they suspected a serious problem. After the pediatric neurologist looked at the EEG, he told me that he wanted her to get into an MRI as soon as possible. He also said that my beautiful little girl had Infantile Spasms. Instead of explaining what that meant, he told me I could look it up on the internet. I was given a prescription for ACTH (a steroid) and the nurse showed me how to give my daughter the shots in her legs to administer it.

Later that night, I sat in front of the computer, tears welling in my eyes. “Infantile Spasms” sounded so benign, but what I saw on the screen was incomprehensible. How could my child have this this horrible condition? 90% of children who have Infantile Spasms also have West Syndrome which involves severe developmental delays, most never learning to speak or even walk. Ninety percent! I couldn’t wrap my brain around it. In 10% of the cases, the children manage to avoid the worst of the developmental delays. In 2%, no cause can be found. Desperately I searched for more information. Stories with good outcomes. Something to give me hope that my daughter had some kind of chance. I found support groups and a few personal web pages chronicling the journeys of parents with their horribly intellectually stunted children. Steroid treatments. Huge weight gain. Minor improvements and then a backslide into oblivion. Such a thing shouldn’t be possible. Not for me. Not for my Anna. These other parents celebrated the achievement of the acquisition of a few ASL signs by their ten year old or maybe a spoken word or two. It was devastating.

My one hope came in that the MRI revealed nothing in the structure of her brain that would cause my daughter’s seizures. At least there was that, but something had to be the cause of the horribly debilitating seizures. With no cause, what could be done?

I can’t begin to describe the depth of sorrow and fear that settled into my soul. There was that two percent, but the 98% overwhelmed me so that it looked like 100%. No chance for a good outcome. I would spend the rest of my life caring for a child who might, someday, learn to speak a few words.

Thankfully, that turned out not to be the case for me. The ACTH treatment were successful in stopping Anna’s seizures. After four weeks of the steroid, she was free of the spasms and regaining her lost skills. Her repeat EEG after six weeks was normal. Normal. I almost can’t believe it even now.

Anna is now a healthy four year old little girl. I forget all the time that she used to have a seizure disorder. I suppose we won’t really know for several more years whether or not there will be any residual effects from the seizures, but she doesn’t seem to have been affected either intellectually or developmentally. She is certainly smart enough. Anna has basically taught herself to read. Her handwriting needs some work, but I guess I’ll cut her some slack on that. ^_^

There is no way to know that Anna's future holds, but Thank God for that 2%.


And we know that all things work together for the good of those who love God, those who are called according to his purpose.