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What is wrong with my daughter
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What is wrong with my daughter

My daughter is 13 and very athletic.  She played volleyball this fall.  Started her Bball season with no problems and then suddenly about 3 weeks into bball over Thanksgiving, she suddenly started to have trouble breathing off and on.  It has gotten worse with time.  There seem to be three stages while practicing.  Shortness of breath, then dizziness and heavy feeling feet, then confusion.  She's been to specialists.  Cardiac did ecg and echo.  Both were normal.  She wore a monitor for 48 hours and cardiologist said the order of her waves on the read-out were in the correct order.  He indicated that sometimes her heart rate was as high as 200 and as low as 43, but not to worry, no big deal.  Pulmonary did extensive testing and said lungs great, but during her stress test her O2 sats were only at 56% of predicted values and her work ability was only at 58% of predicted.  He referred us to  KU med center Feb 23rd back to extensive pediatric heart evaluation.  I want to be prepared for the visit.  I bought a pulse/oxygen monitor to check her.  After sprints her heartrate seems to drop rather quickly (within a minute) down to 60bpm.  Others on her team are still at least in the 90s at the same time. Her O2 sat seems to start dropping after that, starting around 90 and sometimes ending up in the high seventies after she gets home.  She can have these attacks at anytime, wake up with it even.  They are consistantly present during bball, though.  Could a sudden drop in heart rate cause her symptoms and what will they be able to do about it.  What sort of test will they do on her??  How should I prepare to deal with these doctors  Help.  
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I forgot that one of her symptoms is heaviness in her chest.  Pressure, like someone sitting on her chest.
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I hope things go well for you. I am not sure what to think. my son who is only 5 can have a HR that goes anywhere from 45-over 200. he had a ep study,. the cardiologist told me that this can be normal as long as they aren't symptomatic. my son has complained of chest pain and gets very sweaty when he gets pain also he could be walking or running and al of a sudden hi HR will drop and he is near passing out and his sats go into the 80's which is also not normal.
Do you have a sat machine? document is a suggestion to try to pin point more.
Please if you get an answer let me know. I know there is something wrong with my son but i feel helpless and so afraid to loose him. he was suppose to get a pace maker but they said let him pass out or come close to passing out as can be 4 more times before they will consider.

Also ask for a 30 day event monitro or maybe a 72 hour holter monitor. don't stop searching for answers until you feel it is solved. I have been going for 4 1/2 years my son has a history of cardiac issues.

Oh I have to ask does she turn color and if so where do you notice the color change in her. my son has it between his eye and around his lips and so they say it isn't on his lips it can't be happening. everyone has seen this and the cardiologist doesn't want to listen
good luck and please, please if you can get some answers let me know. thank you
michelle
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I will keep you informed of any progress toward an answer.  We go to KU med center the 23rd of Feb., so it will be awhile.  I had to get angry with and hang up on the pulmonologist to get him to listen to me.  He said she was just growing fast and out of shape.  Neither of which is true.  She does sports year round and hasn't grown in a year.
Try another opinion and be pushy.  I've found with my on mystery health issues (now solved after 2 years of drs.) that you have to be an advocate with the doctors.  No offense men, there are really great male doctors, but I have had the best success with female drs.  I think it is the whole venus/mars thing.  Good Luck and I'll check in with you after the 23rd.
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Hello, I was just reading through these posts about your daughter. You are probably scared half to death over what is happening. I agree that you must be an advocate for her. Consider having an EP Study done where they do a cath and have the electrical system checked for any significant electrical problems such as irregular heartbeats which could be causing the problem. Her heart rates on the Holter testing are more than likely fine. It's what she is doing that determines heart rate. Her breathing also determines heart rate. It's more of a problem if her heart rate doesn't go up; for example, she's running on a stress test for say 12 minutes and her heart rate can't break the 100 beats per minute. If that happens you have a problem. Most over the counter devices for checking the blood pressure, oxygen levels etc. are basically useless. I can tell you if the readings you are getting are acurate, your daughter would, more than likely, be in the hospital on oxygen. Sat levels they don't like to see under 95%. A sudden drop in heart rate means that there is a sudden drop in blood flow to the brain; your daughter would faint or have what is called pre-syncope, the stage just before passing out. They may want to do a Tilt Test to check how her blood pressure works.  One thing is that none of this is adding up, so I'm sure you are pretty frustrated and her doctors probably are as well. Teen-agers are sometimes an enigma! One of the biggest complaints that send teens to a Pediatric Cardiologist is chest pain. The reality is that true chest pain, caused by heart disease in children, is EXTREMELY rare. There are only a couple of forms of heart disease in children that cause true, heart related, chest pain and in those children the heart disease is severe, not something you could miss. Let us know how things go for you at KU. I wish you well.      
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You asked how should I prepare to deal with these doctors? I'm taking it that you are going to a University Hospital. That's a whole new ballgame compared to your regular doctor's office or regular hospital. My biggest piece of advice may not go down well with you, but here goes: don't tell the doctors about the monitor you bought. That will lead these doctors into believing that you are an over anxious mom who doesn't know anything. They aren't going to want to tell you too much for fear you will go balistic and fall apart at the seams. Let them find out what is wrong with your daughter on a clean slate. If there's a problem, believe me, they'll find it. Remember, they will do vitals on her to begin with; if her SATs are really low, they won't miss that. Remind them that you are her mother and that you live with her each day and that you KNOW something isn't right. A good pediatrician will tell you: "Listen to the mother, she knows her own child."  
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That is excellent advice.  I don't want to influence their thinking either.  I also want them to tell me everything!!!!!     Thanks.  We'll just state the symptoms and let them lead us to a diagnosis.  I have had to advoate for my family's health in the past.  I hate confrontation, butI won't settle for less than full effort on their part or anyone brushing us off.  Great advice!!!!!
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I have dealt with doctors for the better part of 28 years with my own daughter as well as having worked in the cardiology field. One of my closest friends is a Pediatric Cardiologist. If you are direct with the doctors and explain that you can handle anything they tell you, even if you don't like it, they will be more apt to tell you everytthing that is going on. Good Luck and let me know how you fare. If you have problems, I'm here to listen and help if I can.
Take care
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