![]() ![]() This meant a referral to the Pediatric Neurology Department at the University of Iowa Children’s Hospital. At this point we were told that with the addition of some developmental delays, we could no longer say this was a Benign Epilepsy of Infancy and we needed to dig deeper. She could roll, but was not even close to being able to sit-a skill her twin had mastered at 5 months. Other than the obvious seizures, we had no other concerns about her development.Īt 6 months when Aubree went to see Dr G we reported some concerns over some delays. He assured us this was normal up to 6 months old but referred us to Pediatric Ophthalmology just to be sure. Abigail had already outgrown that newborn “cross-eyed” behavior, but we continued to see it in Aubree. We still didn’t have a definitive answer for Aubree’s seizures.Īt Aubree’s 4 month well-child check with her Pediatrician, Dr L, I voiced concern about Aubree’s eyes not aligning well. She was started on Keppra, an anti-seizure medication, and we got to take her home after a 5 day stay at Blank Children’s Hospital. With everything else being normal, we were told she likely had Benign Epilepsy of Infancy and would outgrow her seizures by age 2. The good news, her brain activity was completely normal between seizures. ![]() When Dr G returned to see us he confirmed what we already knew, Aubree was having seizures. Aubree was placed on a video EEG to look at the electrical activity in her brain. ![]() Dr G had them run a million tests-blood draws, urine catheterization, lumbar puncture, brain MRI- to search for a cause for her yet to be confirmed seizures. Aubree, ever the one to be accommodating, had a seizure while he was talking to us. The following day we met Dr G, a Pediatric Neurologist at Blank, for the first time. She was admitted to the hospital so she could be seen by neurology the next day and determine if she really was having seizures. They started an IV, took blood, did a CT-Scan of her head…and she had 2 more seizures. ![]() When we got to the ER at Blank Children’s Hospital, which is thankfully only about 20 minutes from our house, they very quickly took Aubree to a room to begin assessing her. It would be the first of MANY breakdowns over the first year of Aubree’s life. I remember my mom hugging me as I broke down as the reality that something could be really wrong overcame me. I called my parents who live about 20 miles away and my mom got to our house in record time to stay with Abigail and their older sister Brynlee while we went to the ER with Aubree. I yelled for her dad, Troy, that she was doing it again and we needed to go to the ER. Her back was completely arched, eyes open and fixated, and all of her extremities were rhythmically twitching. The following night just before 10:00 p.m., she did it again and this time it was much more obvious it was not “normal” baby twitching. I called her pediatrician who told me it was likely sleep myoclonus (the normal baby twitches), but to take her to the ER if it happened again and it didn’t seem normal. I, her mother, was holding her when it happened and my mommy instinct told me it wasn’t normal. It was short, only about 10 seconds long, and the others who saw it that day thought it was just the normal baby twitching they do in their sleep. On Easter Sunday when Aubree was just 7 weeks and 5 days old, she had her first seizure. They were both perfect in every way with no sign of the storm that was to follow. Here is Aubree’s Story…Īubree and her fraternal twin, Abigail, were born on February 25, 2014. Words on the screen explaining how your world came crashing down are heart-wrenching to see and the emotions I felt while experiencing this story in real-time came flooding back just as raw as they were the first time. Putting onto paper, or my laptop as it is, the story of how our CDKL5 Deficiency Disorder journey began is hard. As I finally sat down today in the few free moments I have with 3 busy girls 6 and under, I very quickly realized the root of my procrastination. I enjoy writing and am never hesitant to be involved in anything related to CDKL5 Awareness, but for some reason I kept putting off writing this. I have procrastinated in writing Aubree’s story for this Spotlight. ![]()
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