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And, after one doctor's appointment... my summer plans are changing.


LisaK in VA
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LEGOManiac has been diagnosed with Wolff-Parkinson-White Syndrome, a congenital heart condition.  I don't know much beyond what the internet tells me.  What threw me is that the Navy doctor treated it like less of a big deal than the asthma he's never had symptoms of (looking through his records, the peds doctor thought he had vocal cord dysfunction, which actually matches his symptoms -- whereas asthma never did.   I'm not saying he didn't have asthma, just saying that's not what was causing his symptoms).

 

So, we were supposed to be in one place, touring a college, getting acquainted with the swim coach, making plans, having fun -- and now, I'll be at the pediatric cardiologist praying we get some treatment that will at least allow him to continue swimming, even if all his other plans may be shot.

 

Now, since this is a congenital disorder, I want to have all the kids tested (EKG), and myself.  Pretty sure dh doesn't have it.  Makes me a bit worried.

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Oh, I am so sorry to hear that.  I'd be reeling from the sudden change in all the plans and worry about everyone's health.  I'm sorry you're having to deal with this.  :(

Edited by Garga
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Did you already do testing beyond EKG?  For what it's worth, my child's EKG looks like WPW, but after EP testing (cardiac catheterization procedure), the EP doc said no (he already has hypertrophic cardiomyopathy and the combo with WPW would have been a problem).

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Did you already do testing beyond EKG?  For what it's worth, my child's EKG looks like WPW, but after EP testing (cardiac catheterization procedure), the EP doc said no (he already has hypertrophic cardiomyopathy and the combo with WPW would have been a problem).

I agree.  I have a friend who was told the child had WPW but further testing revealed something else.  

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Did you already do testing beyond EKG?  For what it's worth, my child's EKG looks like WPW, but after EP testing (cardiac catheterization procedure), the EP doc said no (he already has hypertrophic cardiomyopathy and the combo with WPW would have been a problem).

 

No, just referred to cardiologist today (appointment set upon our return).  I know they will do a sonogram to check for thickening of the heart walls, and maybe something else, he is also having a pulmonary function test done (possibly next week). 

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Lisa I am very sorry to read about the Cardiac issue your DS has. You did not mention having your DH checked for that too? Is that something only transmitted by the Mother?  I hope you can get him to an excellent Cardiologist, ASAP, to be thoroughly examined. Our health and safety are very fragile. Everything else is plastic and can be replaced.   I will include your DS in my prayers.  Rethink your trip to the USA and possibly you can arrange to take him to the Cleveland Clinic (the best or one of the best Cardiac hospitals in the USA?), or somewhere in that league, to find out what's going on.  I believe that if I were a doctor, the hardest thing, after making a Diagnosis, would be to decide which medicine to prescribe  .  Diagnosis might be fairly easy for an Orthopedic specialist, Not so for an Internal Medicine specialist or many other specialties.   When we had good medical insurance, my #1 doctor was the head of Cardiology at the  best hospital here.  He probably had a lot of patients where he could not diagnose properly, until they had different tests and examinations.  Again,  I will include your DS in my prayers. 

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Wow, Lisa. That is quite an unexpected change of plans.

 

I had my younger daughter go to a free heart screening by a non profit organization, the Erick Paredes Foundation. My mother in law had a congenital heart condition and my daughter had complained several times of heart pains. The pediatrician had attributed those to her asthma but I wanted to rule out any heart issues. She had the ecg and then the cardiologist sent her for the ekg. Thankfully, everything was normal. I hope you can receive the best news possible this summer.

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:grouphug: :grouphug: :grouphug: :grouphug: Prayers and I hope that you get reassuring news soon. The good news is that cardiologists today are able to make many congenital heart conditions more of a "nuisance" thing rather than a seriously life impacting one. I don't know anything about the specific condition mentioned but I will be keeping your family in my thoughts and prayers.

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No, just referred to cardiologist today (appointment set upon our return).  I know they will do a sonogram to check for thickening of the heart walls, and maybe something else, he is also having a pulmonary function test done (possibly next week). 

 

Echo is important in general, but I am under the impression that it is not dispositive of WPW in particular.  Anticipate the possibility of EP testing via cardiac cath.  The cardiologist can also run genetic tests.  (Any chance you have done 23andme?  I found one of the SNPs in our 23andme results; my kiddo does not have the bad one.)  You'll have so much more info after you see the cardiologist.  Good luck with that appt!

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I'm so sorry to hear this.  You are in my prayers, and just in general, it is amazing what pediatric cardiologists can do now.  I have a niece who was born with a severe defect, and it was corrected with surgery (two of them) and she is expected to live a fully normal life (now 19 years old.)  May you find answers better than those you fear most.

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Big hugs. If it helps ease your mind about the other kids, just because it is congenital (there from birth), does not mean there is any high risk for your other kids. Most likely you and them are just fine, it just happens sometimes. Hope you gets some good answers from the cardiologist.

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You may not have to change your summer plans just yet. My exH has WPW. He had an outpatient procedure and within a few days was cleared to resume all activities. That was over 20 years ago, so hopefully they can do even more for you now. Best of luck to you and your son!

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You may not have to change your summer plans just yet. My exH has WPW. He had an outpatient procedure and within a few days was cleared to resume all activities. That was over 20 years ago, so hopefully they can do even more for you now. Best of luck to you and your son!

This. Something like 40% of people with WPW never have symptoms. Of those that do, a simple ablation fixes it and they go on to live a normal, restriction free life. It's a very very small percentage that ever have any difficulties with it.

I've had many patients over the years that, when taking a medical history, have told me they either have had asymptomatic WPW or have had the ablation done. I've never met one yet that had any physical restrictions or lifelong problems.

 

It's likely that, practically, asthma would be more of a hindrance.

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This. Something like 40% of people with WPW never have symptoms. Of those that do, a simple ablation fixes it and they go on to live a normal, restriction free life. It's a very very small percentage that ever have any difficulties with it.

I've had many patients over the years that, when taking a medical history, have told me they either have had asymptomatic WPW or have had the ablation done. I've never met one yet that had any physical restrictions or lifelong problems.

 

It's likely that, practically, asthma would be more of a hindrance.

I'm optimistic about his treatment, for the moment. But not about his swimming with one of the service academies (he has two interested, and a total of 4 letters thus far from interested schools, and six we'd like to see you if you can stop by) or getting an NROTC scholarship. From what I've been able to find, the potential to get a medical waiver for this condition is pretty much nill (won't have time post treatment). We know he won't get a swimming scholarship. Swimming was a hook, and his best chance to help get in, but ROTC/service academy was his financial path through. While all is not lost yet, it feels kind of bleak. But it could make great essay fodder. He still has his Eagle Scout Award, Vigil Honor with OA, National Honor Society, and hopefully a 1400 SAT tomorrow. Everything else is on hold until the meeting with the cardiologist.

 

He's supposed to go to an elite swim camp in 4 weeks. But he's no longer cleared to swim. Visiting two of the service academies, andcolleges he can't afford to attend without NROTC just feels a bit pointless. I know in the larger scheme of things, this is a hiccup. Dreams die...and we get new ones. He's just been working so hard this year. The letters of interest were finally coming. The recommendations and nominations.... my heart just hurts now.

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Lisa I am very sorry to read about the Cardiac issue your DS has. You did not mention having your DH checked for that too? Is that something only transmitted by the Mother? I hope you can get him to an excellent Cardiologist, ASAP, to be thoroughly examined. Our health and safety are very fragile. Everything else is plastic and can be replaced. I will include your DS in my prayers. Rethink your trip to the USA and possibly you can arrange to take him to the Cleveland Clinic (the best or one of the best Cardiac hospitals in the USA?), or somewhere in that league, to find out what's going on. I believe that if I were a doctor, the hardest thing, after making a Diagnosis, would be to decide which medicine to prescribe . Diagnosis might be fairly easy for an Orthopedic specialist, Not so for an Internal Medicine specialist or many other specialties. When we had good medical insurance, my #1 doctor was the head of Cardiology at the best hospital here. He probably had a lot of patients where he could not diagnose properly, until they had different tests and examinations. Again, I will include your DS in my prayers.

DH has had multiple EKGs, and nothing amiss. My dad developed atrial fib out of the blue about 10 years ago. So...that's what has me thinking it's from my side.

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@Lisa I understand, totally, about the extreme importance of him receiving maximum Financial Aid, and the help Swimming is, toward getting that Financial Aid.  But I think at the moment, you need to concentrate on getting him diagnosed properly and finding out what, if any, restrictions there are, on his physical activity. His health must  come above everything else.  A Board Certified Internal Medicine/Cardiologist can get a workup on him and figure out what is going on and what, if anything, needs to be done. There are many outstanding hospitals in the USA. This one, in Houston, is one of those:   http://www.texasheart.org/  The Cleveland Clinic is another one.   I will include him and your family in my prayers.

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FWIW, a spontaneous mutation is also possible.  That is the case with our kiddo's particular cardiomyopathy.

As a PSA in general, I want to be careful about downplaying the risk of certain cardiac anomalies.  Some, including both WPW and my own kid's different issue, are known to cause teens to keel over on the athletic field.  Better to find out the "easy" way rather than the hard way.

(While my kid's issue is different, ablation was not possible due to his particular situation; too much risk of cutting off the electrical circuit. Also, in his case, he has significant activity restrictions.)

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@Lisa I understand, totally, about the extreme importance of him receiving maximum Financial Aid, and the help Swimming is, toward getting that Financial Aid. But I think at the moment, you need to concentrate on getting him diagnosed properly and finding out what, if any, restrictions there are, on his physical activity. His health must come above everything else. A Board Certified Internal Medicine/Cardiologist can get a workup on him and figure out what is going on and what, if anything, needs to be done. There are many outstanding hospitals in the USA. This one, in Houston, is one of those: http://www.texasheart.org/ The Cleveland Clinic is another one. I will include him and your family in my prayers.

Thank you, Lanny. Since he's not 18 we have been referred to a pediatric cardiologist in northern VA. I know the cardiologist has privileges in about 10 hospitals, including Innova Children's. We also are receiving the phone number for a well known (internationally respected) cardiologist in Naples, because our landlord knows him. I'm hoping his condition is on the minor side.

 

I haven't said anything to my son about anything regarding college opportunities. Right now, he's taking everything in stride, his heart will be fixed, and it's back to training for senior champs, next season, college NCAA champs and Olympic Trials in Omaha 2020! We'll cross the other bridges as they come.

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FWIW, a spontaneous mutation is also possible. That is the case with our kiddo's particular cardiomyopathy.

 

As a PSA in general, I want to be careful about downplaying the risk of certain cardiac anomalies. Some, including both WPW and my own kid's different issue, are known to cause teens to keel over on the athletic field. Better to find out the "easy" way rather than the hard way.

 

(While my kid's issue is different, ablation was not possible due to his particular situation; too much risk of cutting off the electrical circuit. Also, in his case, he has significant activity restrictions.)

Yes. I read about this. I'm sorry about your son. The risks (at this stage are great)Which is why he won't be training, and why we changed our plans, so we could get in with the cardiologist at the first opportunity.

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I'm sorry. It's really hard. We are still in mourning from when my daughter had to leave off swimming last year. You're in my thoughts. I really hope he can keep swimming.

I do, too. I'm sorry about your daughter! I think ponygirl would be crushed. Swimming is her happy place. LEGOManiac enjoys the thrill...but has so many other interests. DD breathes chlorine.

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I'm optimistic about his treatment, for the moment. But not about his swimming with one of the service academies (he has two interested, and a total of 4 letters thus far from interested schools, and six we'd like to see you if you can stop by) or getting an NROTC scholarship. From what I've been able to find, the potential to get a medical waiver for this condition is pretty much nill (won't have time post treatment). We know he won't get a swimming scholarship. Swimming was a hook, and his best chance to help get in, but ROTC/service academy was his financial path through. While all is not lost yet, it feels kind of bleak. But it could make great essay fodder. He still has his Eagle Scout Award, Vigil Honor with OA, National Honor Society, and hopefully a 1400 SAT tomorrow. Everything else is on hold until the meeting with the cardiologist.

 

He's supposed to go to an elite swim camp in 4 weeks. But he's no longer cleared to swim. Visiting two of the service academies, andcolleges he can't afford to attend without NROTC just feels a bit pointless. I know in the larger scheme of things, this is a hiccup. Dreams die...and we get new ones. He's just been working so hard this year. The letters of interest were finally coming. The recommendations and nominations.... my heart just hurts now.

 

In this situation, I would be inclined to defer applying to college for this coming year and plan on a "gap" year. It would be very easy to explain that you wanted to have him medically cleared prior to applying. IF this turns out to be something that a simple procedure will fix, that's a no-brainer IMHO.

 

I don't know what the Navy calls the program that's the equivalent of the Army's "Green-to-Gold" program, but enlisting for a couple of years might help him get accepted to the service Academy if it turns out he can no longer competitively swim. West Point reserves a certain number of slots for prior enlisted and I presume that the NA does as well. A friend of ours did that as he was smart but had so-so high school grades. Didn't have the GPA to get an appointment straight out of high school but was competitive enough for a Green-to-Gold slot.

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Thank you, Lanny. Since he's not 18 we have been referred to a pediatric cardiologist in northern VA. I know the cardiologist has privileges in about 10 hospitals, including Innova Children's. We also are receiving the phone number for a well known (internationally respected) cardiologist in Naples, because our landlord knows him. I'm hoping his condition is on the minor side.

 

I haven't said anything to my son about anything regarding college opportunities. Right now, he's taking everything in stride, his heart will be fixed, and it's back to training for senior champs, next season, college NCAA champs and Olympic Trials in Omaha 2020! We'll cross the other bridges as they come.

 

You are welcome.  If you are in the NOVA suburbs of DC, I think there is a Pediatric Cardiac facility in DC. One of the on-air people on Fox News (Bret Baier), his younger son was born with heart problems and has had Several (?) surgeries there and is doing very well. Bret Baier and his wife help raise money for that hospital.  The most important thing at this time, IMO, is that you obtain the correct diagnosis, ASAP.  And then, find out what treatment, if any is necessary. And, what restrictions, if any, are necessary.  

 

With regard to the well known Cardiologist in Naples. Yes, there may well be one "in your backyard".  Years ago, I was planning to move to Mexico. A man I knew in Puerto Vallarta told me about an American there, who had a medical issue. I forget if it was Cardiac related, as I write this. Quite possibly it was. Like many other dumb people, he did not want to go to Guadalajara, Mexico, which is about a 30 minute flight from Puerto Vallarata.  He had himself taken to Houston in an air-ambulance.  After he was in the hospital in Houston, and they had him properly diagnosed, they brought in the specialist for that condition. From where? From Guadalajara, Mexico, in a Charter Jet...

 

My belief is that your DS is old enough and big enough to be seen by any Cardiologist, not just Pediatric Cardiologists.

 

I have begun including all of you in my prayers.

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That's so hard! We are in a very similar situation that came up this week. We were told 2 days ago that dd8, who has Turners Syndrome, will need open heart surgery fairly urgently. This wasn't on our radar at all. Her cards appt was just supposed to be a check-up scan. Now they're scheduling her for a sedated cardiac mri and lining up some specialized surgeons for us. Given that we were planning on moving a thousand miles away in 4 weeks, this definitely throws things out of whack. And I've never dealt with this kind of thing before and am finding myself to be very emotional about the possibility that she might not be ok. I'm sorry that anyone else is going through something similar and hope your son is ok.

Edited by Meagan S
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LEGOManiac has been diagnosed with Wolff-Parkinson-White Syndrome, a congenital heart condition.  I don't know much beyond what the internet tells me.  What threw me is that the Navy doctor treated it like less of a big deal than the asthma he's never had symptoms of (looking through his records, the peds doctor thought he had vocal cord dysfunction, which actually matches his symptoms -- whereas asthma never did.   I'm not saying he didn't have asthma, just saying that's not what was causing his symptoms).

 

So, we were supposed to be in one place, touring a college, getting acquainted with the swim coach, making plans, having fun -- and now, I'll be at the pediatric cardiologist praying we get some treatment that will at least allow him to continue swimming, even if all his other plans may be shot.

 

Now, since this is a congenital disorder, I want to have all the kids tested (EKG), and myself.  Pretty sure dh doesn't have it.  Makes me a bit worried.

I'm pretty sure this is what DH had to have minor heart surgery for when he was 21 (he's not here right now or I'd ask him).  Luckily for him it was fairly simple, a heart cath and a couple weeks of rest.  He still has occasional symptoms that make him feel like crap for a day or two but only 1-3X per year.  No problem with sports or strenuous work.

 

Not to diminish your son's issues or the upheaval it will cause you.  Dh was in College at the time and it took awhile for them to figure out what was wrong and he was really ill before the surgery and had to drop out of school, he never went back.  In the end it all turned out okay but was very concerning at the time.

Edited by foxbridgeacademy
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That's so hard! We are in a very similar situation that came up this week. We were told 2 days ago that dd8, who has Turners Syndrome, will need open heart surgery fairly urgently. This wasn't on our radar at all. Her cards appt was just supposed to be a check-up scan. Now they're scheduling her for a sedated cardiac mri and lining up some specialized surgeons for us. Given that we were planning on moving a thousand miles away in 4 weeks, this definitely throws things out of whack. And I've never dealt with this kind of thing before and am finding myself to be very emotional about the possibility that she might not be ok. I'm sorry that anyone else is going through something similar and hope your son is ok.

:grouphug:  :grouphug:  :grouphug:  

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That's so hard! We are in a very similar situation that came up this week. We were told 2 days ago that dd8, who has Turners Syndrome, will need open heart surgery fairly urgently. This wasn't on our radar at all. Her cards appt was just supposed to be a check-up scan. Now they're scheduling her for a sedated cardiac mri and lining up some specialized surgeons for us. Given that we were planning on moving a thousand miles away in 4 weeks, this definitely throws things out of whack. And I've never dealt with this kind of thing before and am finding myself to be very emotional about the possibility that she might not be ok. I'm sorry that anyone else is going through something similar and hope your son is ok.

 

Part of me is kicking myself for not getting the EKG a couple of months ago -- but considering we would still have to wait about 2 months for the referral to the pediatric cardiologist, it all worked out a bit better.  A 2 week wait vs. an 8 week wait.

 

I know going to a pediatric cardiologist sounds really weird with a 17yo, but the adult cardiologist would not touch him -- I called a highly recommended cardiologist first, they asked his age and said "nope, let me get you a phone number."

 

Moving in the thick of something like this -- I can only imagine.  Who stays, who goes, the what-if game.  It's a lot to take in.  We've had some things happen, but this has been a real shock to the system.  I'm sorry about your daughter.  I feel for your family.  I'm glad that most likely -- health wise -- everything will be okay for my son, and that it's not worse.

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I'm pretty sure this is what DH had to have minor heart surgery for when he was 21 (he's not here right now or I'd ask him).  Luckily for him it was fairly simple, a heart cath and a couple weeks of rest.  He still has occasional symptoms that make him feel like crap for a day or two but only 1-3X per year.  No problem with sports or strenuous work.

 

Not to diminish your son's issues or the upheaval it will cause you.  Dh was in College at the time and it took awhile for them to figure out what was wrong and he was really ill before the surgery and had to drop out of school, he never went back.  In the end it all turned out okay but was very concerning at the time.

 

Most likely, we will go for the ablation.  But, what his future looks like will change a bit.  I won't know more until the 19th.  I wish it could have been the 17th, but the 19th is better than the 26th.  I'm glad we found it before he was a lot worse, or had an "attack" pool-side.  After we see the cardiologist, we'll know what we can say to the college swim coaches, and what college opportunities still exist, what taking a "gap year" might do to change things.  My head is still spinning a bit -- and while I'd like to KNOW everything now, that is just not possible.  I have to wait.  One test, one doctor's appointment at a time.

 

Facebook taunted me this morning with a 4-year old photo of my then 13 year old son posing in his USNA t-shirt with a huge grin on his face.  :(

 

Edited by LisaK in VA is in IT
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That's so hard! We are in a very similar situation that came up this week. We were told 2 days ago that dd8, who has Turners Syndrome, will need open heart surgery fairly urgently. This wasn't on our radar at all. Her cards appt was just supposed to be a check-up scan. Now they're scheduling her for a sedated cardiac mri and lining up some specialized surgeons for us. Given that we were planning on moving a thousand miles away in 4 weeks, this definitely throws things out of whack. And I've never dealt with this kind of thing before and am finding myself to be very emotional about the possibility that she might not be ok. I'm sorry that anyone else is going through something similar and hope your son is ok.

 

Sending prayers for your situation to go as smoothly as possible too - all of it - from surgery to your move and beyond.   :grouphug:

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For schedule purposes, keep in mind that, while you'll know more when you see the cardiologist, you still may not know what you need to know.

 

They'll likely do an echo that day before you even see the cardiologist and they'll run another EKG.  However, they may want additional testing (e.g. holter) before they set up an appt for EP testing via catheterization.  The holter test is a 24-hr monitor that is similar to the EKG; you drive or fed-ex the device back to them.  Regardless, it could be a few weeks before catheterization, or longer, depending on the hospital's schedule - of course, in his case, I'm assuming you'll ask to speed that up as much as possible.  The catheterization procedure would then include EP testing and, if warranted, they would do ablation right then while they're "in there."  But, I don't think they can know beforehand whether ablation is definitely doable.

 

There is also an exercise test (sometimes called a stress test) involving an exercise bike.  This test was also scheduled separately at our local children's hospital.  But, I don't remember at what point in time that we did this test.  (There was also an MRI but that's specific to cardiomyopathy, I think)

 

Our initial cardiologist was not great at communicating and we had little info prior to the cath.  Later, we were referred to the cardiomyopathy specialist and stuck with him ever since; we didn't do genetic testing until we saw that specialist, but by then it was 4-6 months after the ped first referred us.  (Also, later, after we had those genetic results, then they tested all five of our other kids)

 

I'm sorry about your ds's training schedule.  I hope this is just a small bump in the road in his case.  (Our cardiomyopathy guy calls himself a dream killer...)

Edited by wapiti
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IMO, it is better to see a pediatric cardiologist.  Two of my girls and I have a genetic defect, so our hearts have to be monitored.  I much prefer the pediatric cardiologists that we have seen.

 

When I get a cardiac echo, it is done by a technician and I learn the results a few weeks later.

 

When the girls get an echo, it is almost always done by the cardiologist himself and we always know the results immediately.

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Heading back to the Navy Doc for more today.  He called me late afternoon yesterday and asked that I bring my son back for more evaluations.  In other news, we fly out of here in one week!

 

Son is struggling a bit now that he knows (in no uncertain terms) he can't train until after we see the cardiologist in 10 days. I'm hoping that the medicine will be an option, so that he can get back to training while he finishes up the tests and waits for the surgery.  Of course, I have to look up those medicines and see if using them will disqualify him from the military...such fun.

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