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Motherof3girls

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  1. Your daughter sounds a lot like mine and it all started out of the clear blue sky. We have seen 2 cardiologist since Feb. this year. The fluttering my daughter was feeling is her heart is out of rhythm. Both cardiologist say her heart issues should not be causing her symptoms. One diagnosed her with orthostatic lightheadedness. When I mentioned POTS to both they said it was a possibility but they couldn't diagnose or treat it. I finally found a doctor close to us that does diagnose and treat it, we go Friday, Fingers crossed that we finally get answers. If you can find a Pediatric cardiologist that is trained in cardiac electrophysiology they may treat Dysautonomia disorders. This site very helpful http://www.dynainc.org/living/finding-right-doctor. I wish you luck and hope your daughter can find the help she needs. I know how frustrating it is.
  2. After we have our appointment Friday I'll let you and everyone know how is goes. Hopefully we'll have good luck and if we do you can call them too.
  3. @SarahA33 Columbus is about a 4hour drive for us. I finally called the doctor's office in the thread that's in Louisville. They were extremely nice and talked with me about 20 minutes. After hearing her symptoms and previous diagnosis and knowing she's an athlete they are going to see her next Friday. I am happy and hopeful that we will get some answers and scared that we won't. He specializes in Dysautonomia and has been treating disorders for 15 years and is associated with the Dysautonomia Youth Network of America so I'm hopeful.
  4. We live in KY. The closest t clinics are in OH and TN. I have been able to find 2 doctors in KY that treat dysautonomia, one doesn't get good reviews and the other I'm going to call and get a feel for them and see if it's worth my time and money to even try and see them (they are a 2 hour drive away for us).
  5. @Davidinaz She's had multiple EKGs that show frequent PACs and an echo that showed mild mitral valve prolapse with regurgitation. We've seen 2 cardiologist and both say her heart is fine and that's not what is causing her symptoms. She's had a 24 hour holter and a 72 hour holter, both just showed sinus rhythm with sinus arrhythmia with frequent PACs. However the frequency increased from 8% with the 24hour to 13% with the 72hour but they didn't seem to think that meant anything. They were taken about a month apart. She was diagnosed with Orthostatic Lightheadedness. When I mentioned POTS both cardiologist said it was a possibility, but then went on to say they thought she had anxiety issues or was deconditioned or some other frustrating answer that wasn't a real answer. She's an athlete and not deconditioned in any shape form or fashion this started on the softball field, she plays school ball, league ball and travel ball, plus she plays in a basketball rec league. She does have some anxiety now, but who wouldn't with her heart rate bouncing all over the place and feeling it constantly fluttering around. I can find only Dysautonomia doctors in my state, the one in the thread above and another, but her doesn't get very good reviews. I've started taking resting and standing readings with a blood-pressure machine and recording them, we ordered her a google fitwatch that does continuous heart monitoring and charts to an app. She also having insomnia issues even though she's fatigued and exhausted. I asked her the other day if she was feeling a little better because she wasn't complaining as much. She said, "No. I'm just getting use to feeling like crap and feeling like my heart is going to jump out of my chest." It broke my heart. My child should not have to get use to feeling like this.
  6. @StayAtHomeMom we live in Irvine. About 46 miles SE from you. We have already seen 2 different cardiologist both have said possible POTS, but just left us hanging. Said we needed to find a specialist, but had no suggestions. One said she just had anxiety and needed therapy. They both say her heart is not the issue that her PACs and mitral valve prolapse are minor and are not causing her symptoms. Her resting heart rate can be anywhere from 85-130, standing 140-160, causal walking 148-170, she dips into the low 40's when sleeping and sometimes her bp is so low you can't get an accurate measure. One doc even said she was deconditioned to which my husband about blew up over. She played basketball and softball up until the day she almost passed out on the field and we found the heart arrhythmia. She's missed the entire school softball season, travel ball starts this week and we are going to slowly get her back on the field and see how it goes. She's scared to death she's going to pass out. I've tried to tell her if she feels an episode coming on to sit down and yell at the closest person to her. If she goes out completely I'll be right there with her til it passes. She's up to 1.5 liters of water on top of other daily fluids and we've increased salt. It has helped some, but she's not been active. I really don't understand what we have to do or what has to happen to her to get some help. Her pediatrician is genuinely concerned, but every cardio seems to be passing the buck.
  7. @StayAtHomeMom I have looked at this site many times, but have not been able to find any info on this Dr. He's not listed on any of the POTS sites and I can't find any reviews on him. I feel like I've already spent so much time and money I want to know that it's a Dr that's going to listen and really try to help her before I even make an appointment.
  8. @LowlypopsMom Thanks for the suggestions. I liked the last cardio we saw and I'm waiting to see what this 72 hour holter says before I do anything else. It just amazes me that they don't mention POTS until I say something about it and then it like well that's a possibility and then go right on to talking about more water etc. I understand the importance on water and salt, but geeze my child was an athlete and now she struggles to make it through school. I feel like I'm talking to a blank wall sometime. We even had one doc suggest she was just deconditioned. Really?!? This all began in the middle of softball season which started before basketball season was even over. It struck like lightening, the day before she was running laps and doing drills. The next day warm-ups made her out of breathe and then she almost blacks out on field. I sometimes feel like they nit-pick and only hear what they want; they are listening to respond instead of listening to the whole story and then making a conclusion.
  9. Thank you for the suggestions. I'm trying find a descent app for her to use to track heart rate and symptoms with. Do any of you know one that's good? I had heard of POTS a couple of years ago because Mayo thought my sister may have it, but she didn't so I never researched it. She suffers from T1D, Graves and AMY. It may just be because I'm familiar with Graves, but I feel like POTS is just like it but without the thyroid being involved. My sister spent years in misery due to her Graves and almost died before they figured it out (of course that was 20 years ago).
  10. How do you get doctors to quit blaming everything on puberty and anxiety! My happy and healthy 12 yr old went from playing basketball and 3 softball teams to barely making it through a school day. It was like lightening striking out of the clear blue sky! She was on the softball field and almost passed out. Took her to primary ped and they sent her for EKG due to her heart being out of rhythm. EKG came back with frequent PACs. Went to cardio another EKG (showing frequent PACs) and did a kind of tilt table test and she almost went out. Diagnosed her with Orthostatic Intolerance told her to drink 3 liters of water daily and increase salt intake. Put her on a 24 hour holter which showed frequent PACs with 2 PVCs was told there wasn't enough to treat. Went back to primary because she just felt awful no energy, complaining constantly of pounding heart and just going up steps getting short of breathe. Primary ordered echo, echo showed mild mitral valve prolapse with mild regurgitation. Went to new cardiologist and that nothing was wrong enough with her heart to treat. They blamed all of her symptoms on anxiety! They act like it's perfectly normal for her heart rate to jump all over the place, the only doc concerned is her primary and I can't get anyone to help. We just completed a 3 day holter which I'm sure we won't get anything any different from. I don't care what the test say something is wrong with my child! Here's a list of all her syptoms heart palpitations, dizziness, nausea, extreme fatigue, weight loss, sudden change in vision, she's always cold, very pale and her newest symptom is brain fog/confusion. A friend of mine who is a nurse practitioner is who suggested POTS. I mentioned to both cardiologist and they both said yeah that's a possibility and went back to blaming everything on anxiety. I'm waiting on the 72hr holter results and then figure my next steps. Was hoping you guys might have some suggestions. Thank you.
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