Meet Madison

Age 3, Neurology Patient

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“In a day, everything can change. Life with my little family was perfectly normal as we knew it.

One evening I got off work early, met my husband and daughter, Madison, at an outdoor restaurant on a warm June night. Following dinner, Madison begged us to stop by the park. She sprinted toward the park, enjoying the swings, running and climbing up and down slides. She was her happy, spunky self – 3 going on 23! She was energetic, outgoing, and extremely active. Little did we know, we were just hours away from drastic, critical change.

The next morning is when our scary and whirlwind of an adventure began. Madison woke up and was completely unable to use her right arm. She couldn’t lift it or grasp her toothbrush. She seemed confused and lethargic as she realized she couldn't even hold a spoon to simply eat her morning yogurt. Madison attempted to play with blocks and was unable to pull them apart or really use her fingers at all. Her walking seemed unsteady and her right leg dragged a little as she walked. She just seemed off balance. We immediately knew something was wrong.

We took her straight to UPMC Children’s Hospital of Pittsburgh Emergency Department where the process began to determine what in the world was happening to our little girl. She was sent for a quick MRI to rule out a stroke, and thankfully that was not the case. Madison was admitted to the Pediatric Intensive Care Unit (PICU) where we stayed for a few days, so she could be closely monitored. Over the course of our ten-day hospital stay, we were introduced to the amazing neurology team, numerous doctors, nurses, child life staff, developed a course of action to get answers. Madison had multiple IVs and blood draws, a few (long!) MRIs where she needed to be intubated and sedated, X-Rays, lumbar puncture, swallow study, etc.

Madison’s brave battle began! The first seven days in the hospital were just plain hard, terrifying, and exhausting. She wouldn’t eat, was very weak, and wouldn’t play or engage in any activities that she once loved. She would have tantrums, kick, and scream at us. The smallest thing would set her off. The extreme mood swings caused by the brain inflammation, mixed with the steroids, were becoming quite the challenge. We just wanted our little girl back.

Madison is a strong little soldier and we have faith that she will be back to herself. After being discharged from the hospital after the initial onset in June, we have been working on her endurance every day and undergoing outpatient physical and occupational therapy a few times a week. She has started to get her fun-loving personality back and has been playing and using her right arm and hand a little more each day.

Unfortunately, we were hospitalized in August for a flare up and the appearance of new lesions in her brain found on a routine follow up MRI. We were also admitted again this October for a two week duration due to balance issues that had crept back in and new lesions found once again.

Finally, after the worry and fear had heightened for my husband and me, Madison was diagnosed with demyelinating disease of the brain, a neurological disorder that is very similar to multiple sclerosis. The entire Neurology team analyzed her case and determined since her symptoms were presenting as MS, were recurring and aggressive, we needed to treat this just as aggressively and take the next step up in terms of care. They wanted to take every measure and precaution to prevent future lesions and we were on board! Madison received three treatments of plasmapheresis, a procedure that removes harmful antibodies and disease causing substances from the blood, essentially, cleaning and flushing out the "bad" from her blood. She also began an iv infusion preventative medication that she will receive as ongoing treatment over time.

I would like to thank the entire Neurology team, especially Madison's neurologist, Dr. Kavita Thakkar, who has provided us with top notch care. Her confidence, positivity, and guidance towards the best treatment plan, expertise in neuro-immune diseases, and her compassion during an exhausting and overwhelming time for my family, has meant more to me than I can express with words. The PICU staff, Unit 6A and 8B nurses were so kind, comforting, and professional. We felt at ease when they would enter the room and we knew that our daughter was in the best hospital, getting the most efficient care at a crucial time in our lives. A hospital environment is far from a normal home routine and to a three year old, can be so scary. The team at Children’s did everything they could to normalize the atmosphere and help Madison feel more comfortable. My Madison is such a brave girl and is a little superhero fighting a big battle and will get through this with all the love and support surrounding her.

I understand now more than ever how extremely resilient kids are! To all the families with their sweet little kiddos fighting in Children’s Hospital, please know you are never alone and there’s a team of people who are going to fight hard for you, to get your child as healthy as can be. You are in good hands. The entire staff is so thorough which helped ease my family’s mind that all the appropriate precautions were taken. I will be forever grateful for the care we received and look forward to helping my daughter conquer any future challenges. There is always HOPE for a better tomorrow and I sincerely thank Children’s for showing us a light during some of our darkest days.”

Lisa, Madison’s Mother