Meet AHC Champion Brooke

Meet AHC Champion Brooke

iPhone 107Erin “Brooke” Kitchens is a silly, sweet, beautiful little girl who loves to play in the mud, get dirty from head to toe, and love on every animal she can find. In June 2013, Brooke was diagnosed with AHC.

In the year prior to diagnosis, she experienced episodes of one-sided weakness, tremors, nystagmus, and worsening seizures. We were often told that she was experiencing Todd’s Paralysis and that it was related to her seizures, however she began to have off/on episodes that were longer than 24 hours. Although our care team ran tests by the multitudes, we didn’t have an answer. Brooke struggled with eating and swallowing, and slowly she stopped having any interest in food. She received a feeding tube in December 2012, and with it has been able to regain lost weight and finally edge away from her Failure to Thrive diagnosis.

The episode that led to her diagnosis began with her waking us up screaming as if she was in horrible pain. When we got into her room we realized that she was screaming because she couldn’t sit up. She couldn’t even hold her head up or lift up her arms. Thinking that maybe she had a seizure that was causing the lack of tone, we called the Neurologist and were told the usual “wait and see, call back if it lasts over 24hrs.” Even after a nap, Brooke couldn’t sit up unassisted and would just cry. She was so listless that we decided to take her to our local ER. On the car ride she stopped crying, and her eyes became fixed upward. The local hospital took her straight from us and called for transport to Vanderbilt Children’s Hospital. During the ambulance ride she fell asleep, and when she woke up she was our Brooke again. She flirted with the EMT, smiled at the doctors. It was unreal. The on-call Neurologist looked through the pictures and videos that we had taken during her episode, and ordered some tests. We don’t know how we managed to luck out, but the on-call Neurologist that received Brooke at the hospital that day had participated in a study on AHC. After searching for an answer for so long, we finally had one. We started a trial of medication to help her symptoms (Brooke gets headaches/migraines around her episodes) and have seen a big difference.

We have found that her triggers are storms, dehydration, extreme temperature changes, and other unknown triggers. Brooke is currently in Physical Therapy, Occupational Therapy, and Speech Therapy. She is developmentally delayed, and has behavioral concerns that we are currently working on. She begins developmental preschool soon, and we cannot wait to see how far she goes.

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