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CFrampsMom

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  1. My 15 y.o. daughter is in the process of getting a diagnosis. She was previously diagnosed with suffering from severe vasovagal reactions but we are thinking it may be POTS instead. She is at an all time low and I am unsure of the best way to support her. She is ALWAYS lightheaded and dizzy. Her heart rate jumps from the 60s while laying down to the 120s while sitting and then up to 140s and above while standing. Some days it jumps up over 200 beats per minute and takes a few minutes to come back to the 170s and then a lot longer to get her back down to a more manageable 130s (with her lying down and legs elevated). School has become increasingly difficult as she constantly feels brain fog. At times her heart rate gets high enough that she can't comprehend what is being said to her. She grays out often but thankfully has only had a couple of episodes of syncope. It has been a very frustrating process. She has been told it's psychosomatic, asked if she has an eating disorder, and has had teachers imply that she just doesn't want to be in school. This is a child that has always been a straight A student and takes her reputation as a student very seriously. Unfortunately, she has missed quite a bit of school this semester. There are days that she can't get out of bed. Thankfully, because she is a good student. she has kept up with her studies and has maintained an A/B average, but it has been a struggle. She was also very active when she was younger, and has become very depressed because she never feels well enough to do anything. She is the youngest of 5 children, and our family is an active family. She struggles with any activity that requires her to be on her feet for too long. Her daily symptoms are dizziness, lightheadedness, nausea, trouble concentrating, graying out, tunnel vision, heart palpitations, rapid heart rate, pounding heart beat, cold hands (always), clamminess, headaches, pale skin, chest tightness and difficulty breathing, fatigue, general feeling of being unwell. We tried Florinef when she was first diagnosed with vasovagal syncope but it did not help and was causing severe headaches. She is currently not medicated. We have increased her fluids to 3 liters of water daily and she takes SaltStick fast chews (contains sodium, potassium, magnesium, and calcium) throughout the day. She was under the care of the cardiology department at Boston Children's Hospital, but we have recently moved her over to Mass General. We have an appointment next week to discuss the results of her tilt table test and are in the process of finding a neurologist for her to see. She is also being seen next month by a geneticist to discuss the possibility of having Ehlers Danlos. She has had an echocardiogram, numerous EKGs, has worn a halter monitor, etc. Her heart is normal, and other than tachycardia the last time she was in the ER her EKGs are normal as well. Her halter monitor showed PVCs, and a couple of brief episodes of tachycardia as well as bradycardia, but the episodes did not last long. So my questions are 1. How do I best support her? 2. How do I explain what she is going through so that others understand? 3. What suggestions do you have in regards to school? Outings? 4. Does anyone in the Boston area have a neurologist that they would recommend? I truly appreciate any guidance in this situation. I want to be the best advocate I can be for my daughter.
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