On Thanksgiving Day this year we very much enjoyed a large dinner with our family and the missionaries. As we finished eating our dinner Rory had just woken up from a nap when all of a sudden we noticed she would go completely limp every few seconds, drop her head onto her dads shoulder, then immediately relax back into an upright position. We watched it happen over and over again and my stomach lunged into my throat and I was panicked. I snuggled her and fed and the episodes stopped. It happened a couple times more before she went to bed, we decided she could just be tired from such a big day, we took some videos of the episodes and decided if it continued to happen we would call her doctor.
The next morning almost immediately after waking, the episodes began. I called the answering service for our doctor, the operator refused to connect us after hearing her symptoms and told us to immediately go to the ER. I panicked. We went to the ER. We spent the better half of our day in the ER. We showed doctors and nurses the video and explained her symptoms a dozen times before they paged her doctor. He came, showed him the videos, described her symptoms and were told to go home, it was just a baby being a baby. I searched long and hard on the internet to find the source of her symptoms, only to come up empty handed.
Almost three weeks went by while these episodes happened multiple times a day, and the head dropping happened in clusters, she couldn't be left to play in her bumbo, or an activity saucer, or left to sit on the floor without fear of an episode striking and causing her to be injured. We noticed they happened even if she was lying down, she would tense and pull her limbs inward, and become fussy. Our lives became a daily act of wondering and waiting.
Two days before her 6 month check up, I was browsing the internet after the kids had gone down, having some much needed me time. I was reading a very interesting article about crazy modern medical practices that surprisingly work. Somewhere in the article was a link to Infantile Spasms, my curiosity told be to click on it. As I read about this disorder my mouth dropped. I could have sworn they were describing my baby. Instantly I knew my prayers had been answered, I didn't stumble upon this article by accident, but at the same time I was terrified by some of the things I was reading... let me share with you some information on IS.
This information is copied from the National Institution of Neurological Disease and Stroke website, I couldn't say it any better than them:
What are Infantile Spasms?
An infantile spasm (IS) is a specific type of seizure seen in a rare epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.
What is the prognosis?
The prognosis for children with IS is dependent on the underlying causes of the seizures. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve by mid-childhood, but more than half of the children with IS will develop other types of seizures. There appears to be a close relationship between IS and Lennox-Gastaut Syndrome, an epileptic disorder of later childhood.
Two days after finding this information we saw the doctor. I told him of my find and requested an immediate EEG. She had one the next day.
A few day later, on Christmas Eve, she saw the neurologist, we walked out of his office with an official diagnosis.
I have never been more scared in my life.
I have a constant fear of the damage that may already be done.
I fear for her future.
I fear for all of the children who go undiagnosed. The only people who know about this disorder are the people lucky enough to fight for answers from a crowd of people who DO NOT KNOW IT EXISTS.
ALWAYS fight for your little ones!
I debated long an hard about when, or if, I was going to share this information outside of the very few people who know we are dealing with it
I have read so many blogs about parents and families dealing with devastating unplanned events. I have found countless inspirations from them, and their courage to fight, and help others to fight.
I want to raise awareness, and let other people know, I WILL FIGHT WITH YOU.
So many times I have thought how unfair it is, that she deserves to have every opportunity that every other child has. No mother should have to face the fact that someday her child may struggle because of something that just happened. I didn't ask for this....
So many tears later, we have decided that first of all, we are not asked to do anything above what we are able.
We have a new set of rules in our house:
1. We will have faith in Heavenly Father above everything else.
2. Priesthood blessings will be abundant in our home.
3. We will not let this disorder beat our love.
We will love her regardless of what the future brings. We are eternally grateful for the love, support, and prayers being sent in our direction.
We will keep you posted. :)
Hang on to your hope. Praying for peace and wisdom for your family.
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