It has been brought to my attention that people would like to share more about Zoes condition with family and friends but that details of her symptoms and disease are buried on the page and hard to find so I thought I would post a bit of an overview tonight for those that have asked. Fair warning....its a book. =) Zoe was born a perfect, healthy baby in April of 2011. In July of 2011 our life changed forever. When she was 3 months old she stopped breathing while sitting in a bouncer seat. We rushed her to an ER where they assured us this was nothing to worry about and could have been anything from a seizure to apnea. Both I was told were one time occurences and not life threatening. At my insistence I was given an emergency seizure medication and an appt. with both a Neurologist and a Sleep Specialist. At the sleep specialist Zoes blood pressure read at 167/110. I will never forget the reading. She was calm and they were blowing bubbles and they took it on 4 machines and had 2 nurses take it manually. My calm, sweet, perfect baby girl had life threatening blood pressure. This would not be her highest reading over the next 3 years. This of course led to many new specialists and test. Over the next 3 years her symptoms would come to include seizures, sleep apnea, clinically diagnosed insomnia, hypertension (high blood pressure), a movement disorder, inter cranial pressure due to an elevated spinal pressure, delayed gastric dumping (she processes her food at about 25% the speed she should), severe migraine disorder, a rare dermatology condition that causes her hair to not take root so it falls out easily, an inability to regulate her core body temp, an inability to regulate her heart rate, and severe anxiety attacks that have resulted in bodily harm. By the time she was a year old she was on more meds than most people in their 70s. We have taken her to every specialist in Childrens Mercy Hospital and when we couldnt get answers and they gave up on her we packed up our 3 kids, half our house (have you ever traveled for an undetermined amount of time with 3 kids) and with the help of some AMAZING friends and their help in fundraising traveled to MN to take her to the Mayo Clinic to have more than a weeks worth of tests done on her. Everything from blood work, MRIs, Spinal Taps, sleep studies, and a large list of other tests were run on her. We got similar answers from Mayo. They didnt know. They thought that she had a variant of Parkinsons and started us on meds for that. Our Neurologist back home was not pleased with Mayo stepping on his turf (yes he used that word in reference to my daughter) and asked to take her off all the meds they started. We fired him. Our new neurologist was recommended to us by Zoes sleep doctor, someone we had grown to develop a personal relationship with over several years of her care. Without this woman I genuinely believe no one would have listened to us and we may not have our sweet girl here with us today. She fought for us and refused to give up. I spent countless days on the phone with her for hours on end while we brainstormed what could be wrong with Zoe. Our new neurologist would be a life changing moment. From the moment we met him we adored him. So did Zoe. Zoe had developed a very real fear and anxiety when it came to medical professional and when she met this doctor she ran to him to hug him and sit on his lap. It was like a huge deep sigh of relief!! When he sat with us for the first time the first words out of his mouth were Tell me Zoes story. Ive read her chart but charts miss things. I want to hear it from her mama and dad. I immediately trusted this kind doctor. He listened and took notes for hours pausing to ask us questions no one else had thought of. After nearly a year in his care we finally have the diagnosis we have fought so hard for. Zoe has an autonomic disorder called PAID syndrome. There are less than a hundred cases of this disease ever and less than a dozen medical papers written on it. An autonomic disorder means that everything that your body should do and regulate subconsciously Zoes fails to do. Blood pressure, heart rate, spinal pressure, body temp, breathing, sleep patterns, even her movements and her equilibrium. There is no cure. There is no help. There isnt enough information on this disease to know how to treat it so we are lab rats so to speak. We work with our doctor to make educated guesses on her treatment. He has added many meds to her already full medicine schedule. We are on constant alert not knowing when her body will decide to betray her. Not knowing when her body temp will shoot up to 105 or drop to 94. Not knowing when her heart rate will jump from 80 bpm to 160 while resting. We are on constant high alert. This has become her life. And ours. Our most recent concerns are her levels of pain and discomfort. Once we get those under control we plan to attack the new seizures that have started back up this week. I really hope that this post helps people understand our journey a little better. My family and I really appreciate each and every one of you taking the time to read this and to like and share this page. Every little bit of exposure for this disease helps us get one step closer to someone searching for a cure! Your support means more than you all know. Every kind word. Every dollar donated. Every hug, cyber or real, is what keeps us going on those really rough days.
Posted on: Thu, 25 Sep 2014 01:29:49 +0000
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