Looking back at this period of time that was so difficult for us has my mind reeling. A downward spiral in to a dark place I hope never to return to. A place where there was so much sadness and stress and worry; a debilitating worry that was almost more than I could bear; constant, crushing, worry. When Danielle was born with Down syndrome I made a conscious decision not to spend my time worrying about the future. Our present-time was wonderful. We had a brand new baby girl. So soft and new, the sweet fragrance of a newborn was enough to slip me in to a blissful repose. That blissful moment in time was ripped away from us as infantile spasms shocked me into an immediate state of vigilance. Not all was well. Our present wasn’t ok anymore. I watched as my daughter suffered through uncontrollable seizures. They would come again and again. I held her tight as I swayed with her and told her repeatedly that everything would be ok. There was nothing else I could do. I couldn’t stop them from coming. The feeling of helplessness was torture. The seizures were relentless, happening every time she woke, and often after feeding. Every ten minutes during her naps I went to her room. I went to her room fearing that she was seizing. I knew the seizures were causing her discomfort and anxiety. I didn’t want her to suffer them alone. She slept with me at night. I would wake to her tiny body jerking involuntarily. I couldn’t stop it, but I did my best to comfort her. The seizures continued through different drug treatments. Each time we tried a new drug or increased her dose I had a renewed sense of hope that the seizures would stop. Each time I crashed back down in to my dark place as the seizures prevailed. Time was our enemy. As the seizures continued Danielle’s condition worsened. She stopped smiling, there were no more coos. She started turning her head back and forth repeatedly, a behavior that continued throughout much of the day. She seemed so incredibly far away from us at this point. We were losing her. It was happening right in front of us. We were losing her and we were helpless. I have never in my life been so desperate.
Danielle’s diagnosis of infantile spasms came three days before her heart surgery. The procedure that had been haunting me for months suddenly became something that I was looking beyond. I was anxious to have her repaired so we could get a handle on the seizures. I understood what the surgery would consist of. I knew that the success rate was very high. I knew she’d be ok. I didn’t know, however, how infantile spasms would affect her, or how she would respond to treatment. The doctors didn’t have much optimism when they talked about outcome. I found myself praying for Danielle to have Down syndrome… JUST Down syndrome!
After failing Topamax, Prednisone, ACTH, and a high dose B6, we finally found Danielle’s miracle drug, Vigabatrin. She has been seizure free since May. As soon as the seizures stopped, she started coming back to us. She was smiling again. Her coos were like heavenly hymns. She was interested in her toys again and engaging with us. The dark clouds parted as our bright smiley girl emerged from the clutches of the monster that is infantile spasms.
I don’t compare Danielle to her typical peers anymore, like I found myself doing in her first few months. I know we’ve been given a gift in this child. She is a beautiful soul. She has been through the unimaginable and still finds it in her heart to be joyful. So joyful! Her spirit is radiating, it reaches in to my soul and awakens parts of me that I hadn’t even realized resided there.
While it is very emotional for me to re-visit this time that was so difficult for us, I have to talk about it. Maybe you’ve heard “infantile spasms” somewhere, or you’re aware that children with Down syndrome have a higher risk of developing seizure disorders, but you might not realize how subtle these clusters of spasms can appear to be, or how damaging they are. It is imperative that IS is treated right away. The first time Danielle had a seizure, as I held her in my arms, I wasn’t really sure what was happening, if anything. My mind raced back to a video I had once happened upon in an online forum of a child having an episode. It was like, immediately there was a flag that went up, an alarm that sounded. I honestly don’t know how long Danielle would have gone undiagnosed if I hadn’t had that video stored in my mind. These videos can be hard to watch, but I want to share them with you.
Here is a video of Danielle were you can see some subtle spasms. Spasms at 0:01, 0:12, and 0:28
Here she is during her first EEG, the spasms are much more noticeable here.
If you find yourself facing an infantile spasms diagnosis, you need to become your child’s advocate. You might find, like I did, that no one will fight harder for your child than you will. If your pediatrician is lagging on looking in to suspicious behavior, push them. I was ready to head to the emergency room insisting an EEG had my daughter’s pediatrician not been willing to have her admitted right away (which she did). If you are not confident in your neurologist, don’t be afraid to get another opinion! Don’t forget that your doctor works for you. If you can’t get an appointment from the front desk, stalk the doctors’ nurse for an opening. Seek out an epileptologist, or a neuro who has experience with infantile spasms.
Please, check out this inspiring woman. She’s the mother of a child who currently battles infantile spasms. She is getting ready to run the Marine Corps Marathon on October 28th, in effort to raise awareness of Infantile Spasms, and to raise money for much needed epilepsy research. Let’s cheer her on!
She knows too well, the guessing game that is moving through the list of AED’s hoping one will work. There are children who are suffering now that could benefit greatly from new research.
Here is her story.
Please visit her donation page, if you feel inclined to do so.