T_Anna Posted August 9, 2013 Author Report Share Posted August 9, 2013 <<n the mean time, get an appointment with the ped cardiologist and stay in tunned to dizzy spells, palpitations and such and keep a diary of any such events. Make sure your child is always well hydrated and not electrolyte imbalanced but as always don't go over board either.>> Thanks Dedee. It was a pediatric cardiologist and pediatrician, but it wasn't a full workup and since DH had a HA at 31 we will follow up, but now at least I can wait until leaving the house isnt such a huge issue. That said, I'd still be hesitant to put him back on Azith or Biaxin. T.Anna Link to comment Share on other sites More sharing options...
trintiybella Posted August 9, 2013 Report Share Posted August 9, 2013 Dee Dee- Dr. T. Gave us Rx. For EKG that we just had done. Do you think I should wait for results before making appointment with pediatric cardiologist? Link to comment Share on other sites More sharing options...
JoyBop Posted August 10, 2013 Report Share Posted August 10, 2013 Great response Dedee! Thanks for putting that out there. My drs wanted ekgs on both my kiddos for long term use of abx and intunive. Our PCP did the test and it was perfectly normal. The psychiatrist looked at the result and it looked as though there was an abnormality but I fact it was perfectly normal for a child, not an adult. I would agree that a ped cardiologist is the way to Link to comment Share on other sites More sharing options...
tpotter Posted August 10, 2013 Report Share Posted August 10, 2013 It was my son who had the aortic valve replacement in June. But, the damage was a congenital defect (partially fused cusp, giving him a functionally bicuspid valve...aortic is usually tricuspid.) It was stretched out, which led to it being a severe leak (possibly stress and/or really poor college diet caused the worsening of the leak). Anyway, we also found out that his blood was positive for bartonella (did the Galaxy test), but his tissue sample was negative (so we don't believe that the bartonella played a role). This is significant, because bartonella can damage the aortic valve. Link to comment Share on other sites More sharing options...
thenmama Posted August 10, 2013 Report Share Posted August 10, 2013 My kids have had EKGs for being on abx to make sure the QT is not affected. Worth noting, to, that my kids don't have a predisposition for long QT (at least not that we're aware of). What docs are looking for is that the drug does not prolong the QT interval, which can have serious, potentially fatal, consequences. Some drugs can prolong the QT or cause what they call long QT syndrome. I'm surprised I haven't heard of more kids having EKGs, especially with Azith being one of the drugs that's considered a risk-- along with other neuro and psych drugs. I've heard in Dr. M's abx study they're doing regular EKGs. Our PANDAS doc and ped were on top of this, too. I also wonder if many of our kids have the EKGs and b/c it's just a monitoring thing, not a treatment, most of us just aren't mentioning it. I hadn't thought to post about it until it came up in this thread. Link to comment Share on other sites More sharing options...
tpotter Posted August 12, 2013 Report Share Posted August 12, 2013 I have mitral valve prolapse with a slight regurgitation. This can be caused by strep (think rheum. heart disease,) and by bartonella (can affect the mitral and aortic valves.) Link to comment Share on other sites More sharing options...
LaurenK Posted August 12, 2013 Report Share Posted August 12, 2013 (edited) Thanks Tpotter, but I was actually already aware of the connection there, as I've been dealing with the disease for about 15 years now. I have the genetic marker d8/17 which is often found in rhematic fever. I was diagnosed with mitral valve prolapse shortly after the strep infection which led to PANDAS at age 10. I was told that PANDAS can be linked with heart issues and therefore to get a yearly EKG. Edited August 12, 2013 by LaurenK Link to comment Share on other sites More sharing options...
Dedee Posted August 12, 2013 Report Share Posted August 12, 2013 Long QT syndrome is a familial disease that is genetic. Many drugs can also legthen the QT interval as well. Do a google search for "drugs that legthen QT interval" and you will find a long list. These include many antibiotics, antihistimines, antihypertensives, even some cardiac drugs and more. So some people that do not have genetic long QT can show up with long QT from being on multible medications which cause lengthening of the QT interval. This usually happens by seeing more than one physician and each different doctor or specialist isn't aware of what the patient is taking from another provider. Many insurance companies won't pay for an EKG unless there is a good reason or pay for a cardiologist unless there is a "valid " reason. So that may be why many don't get the EKG. I have always thought it should be part of sports physicals. That is just the cardiac nurse coming out. I have two kids on antibiotics that can lengthen QT. I personally havent worried about a EKG but that is because we do not have a history of early death in our family. We have a history of coronary artery disease but that is totally different. I do watch other medications the kids take and I would certainly take heed if they complained of palpitations, or dizzines more than usual. I also believe that parents need to be completely comfortable giving there kids meds so if anyone feels they need a simple EKG to feel in a better place, you should ask for it. This is not a unrealistic request and certainly not terribly expensive. After all, we have already shown that we can beat statistics right? Dedee Link to comment Share on other sites More sharing options...
JoyBop Posted August 13, 2013 Report Share Posted August 13, 2013 Most insurance company's will cover an EKG on a healthy child if billed with the code for prolonged use of medication. It's v58.69. Two if my kids had them for Zithromax. Without proper coding it would not be covered. I agree that one would be helpful for athletes. Link to comment Share on other sites More sharing options...
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