Friday, September 30, 2016
The Day Our Life Changed
December 5th 2015 our lives took a turn in a direction we never thought they would go. After a feeding, Juleyana burped and I put her to play. I had the baby in a jump saucer, she was 5 months old by this time, playing (actually let me rephrase that....screaming) as usual with her brother playing along by her side. I noticed I didn't hear her screaming as usual, when I turned to look to see what was going on I saw her with her head down and drool coming from her mouth. She wouldn't respond to me or her siblings as she usually would and stared off into space. I picked her up right away. I blew in her face and she blinked, but wouldn't respond otherwise....with my medical background it appeared she has having a petite mal (staring into space) seizure. No medical professional will ever be prepared to face the emotional roller coaster of their own child enduring a seizure. Of course we called 911 and off to the hospital we went. In ER they discovered she had a fever 101.1. They attribute the seizure to the fever, and explained that they need to do a spinal tap on our 5 month old. Many thoughts ran rampant in my mind....we debated for hours....what if it was meningitis?.....but what if it wasn't? So, we went with the spinal tap and blood work and various other IVs. We so badly wanted to know what was going on with our baby. We left the hospital with a diagnosis of febrile seizures. We found a new pediatrician and from then on have been on the hunt for a diagnosis. We were told by her new pediatrician that if she has more than 3 febrile seizures, or one without a fever than she probably has a seizure disorder. Words no parent wants to hear. At this first visit he also started Juleyana on omeprazole for reflux. Well, in January she had 2 more episodes of staring, drooling and not responding...all of them happened within 1 hr after a feeding and the episodes last 5 to 10 minutes. Every episode had a call to 911, ER visit and a post visit to her pediatrician. He told us what he thought and referred us to the pediatric neurologist. We came with what we thought....Sandifer Syndrome. It made sense, she has the unusual staring seizure episodes after a feeding. Not every feeding though, they happened randomly, and she still spit up more than usual. The pediatrician also referred us to the GastroIntestinal (GI) as well....I would post video, but at this time it is still hard for us and most to watch.
History of life thus far
June 23 2015 our baby girl was born, we named her Juleyana Joy. We loved her from the moment we knew she was growing in the womb. Labor was smooth, and without complications. Pregnancy was as well, with the exception of a Echogenic focus on her heart (which turned out to be nothing, very common). She was happy and healthy.At 2 months of age we took our baby for her check up, and to voice my concerns. I told our pediatrician that there was something wrong with my baby. She screams bloody murder every time I put her down and all day long. They said she had reflux, and gave us Zantac. We did that for awhile with no success. By this time, we noticed that she was spitting up every feeding more than usual, and continued to cry a lot like she was in pain. We continued to deal with it and loved our baby girl unconditionally. We thought with time she would get better, but that lasted almost 1 year. We did notice that she wasn't smiling as her older siblings did by this age, but we of course attribute it to her being so unhappy all the time. She also had poor head control (dropped her head) and arched her back with feedings. We continued to thing everything would be okay; we have 2 older kids age 4 and 3. We made it with them we can do it with this one. Everyday life is trial and error. Trying to figure out what we can to to make her happy.Welcome
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