Mommy2MCL Posted January 6, 2014 Report Posted January 6, 2014 Does anyone here have any information? Good/Bad? What does your PANDAS Doc say about long term antibiotics and its effects on the heart? I am FREAKING out because my DD was born with a Congenital Heart Defect, Pulmonary Stenosis. She has had 3 balloon valvuloplasties at 2 days, 13 days and 2 years. At 4 we were cleared to see the cardiologist for 4-5 years. Now she is 8 and has the PANDAS diagnosis.... She was put on 250mg of Zithromax on Dec. 14th and we have taken it daily. Before that we started Augmentin since Nov. 7th... So 1st I am going to message our PANDAS specialist, and next make her an appointment with her cardiologist. Her cardiologist is apart of Texas Children's in Houston and I have heard they pretty much deny the existence of PANDAS. I will email him but what do I say? He is very specialized with what he does but what if he doesn't believe in a PANDAS diagnosis?
pr40 Posted January 7, 2014 Report Posted January 7, 2014 you don't have to say that abx is for PANDAS, you can say that they are there because of an infection. about abx and heart -- is there a relation? heart is a muscle and I've never heard that abx affects any of the muscles. the one issue I see with surgery is sedetion given that your dd might have auto-immune issues (which is how we normally introduce PANDAS).
Mommy2MCL Posted January 7, 2014 Author Report Posted January 7, 2014 There was a study that came out last year. This is just one of the articles but many come up... I hadn't really thought much of it but in the past 2 days 2 people have posted in a couple of the Facebook Forums I belong too. So that got me googling... http://thechart.blogs.cnn.com/2012/05/16/popular-antibiotic-linked-to-higher-risk-of-heart-disease-death/
cara615 Posted January 7, 2014 Report Posted January 7, 2014 http://www.m.webmd.com/heart-disease/news/20120516/z-pak-heart-attack?page=1 Read this. Puts it into more perspective.
Mommy2MCL Posted January 7, 2014 Author Report Posted January 7, 2014 I know... I just need to get her in... I think I read it has to do with people who have QT anomalies... Something with the rhythm of the heart. DD's defect will cause blueness in the lips and extremities, extreme fatigue, and loss of appetite... None of which we have seen... Thankfully.
T_Anna Posted January 9, 2014 Report Posted January 9, 2014 My husband had a heart attack at age 31. A few weeks ago he tested + for strep and called the cardiologist who said it was fine to take a zpack. FYI, T.anna Mommy2MCL 1
sf_mom Posted January 9, 2014 Report Posted January 9, 2014 Our younger son had aneurysms at 5 1/2 months of age. He was cleared by his cardiologist at 18 months. He started antibiotics at 2 1/2 years of age for PANS. At 3 1/2 years of age we discovered his PANS was triggered by chronic infections and viruses. He has been treated non-stop since with antibiotics for several infections and viruses that can impact the heart: Coxsackies (very high titers), Bartonella and Lyme. We believe the Bartonella, Lyme and maybe even the Coxsackies were passed to him in-utero and the heart related issues are connected to his chronic infections/viruses. He is now 6 1/2 years old, still on antibiotics and thriving. We saw our cardiologist at about 4 years of age and we did not find her to be a PANDAS/PANS believer or that the two might be related. Our Lyme Literate Dr. 'LLMD' does understand the heart/infection connection and will most likely see a different cardiologist that is referred by our LLMD for his next follow-up. Chronic Strep, Lyme, Bartonella, Coxsackies can all impact the heart. I would spend some time googling the relationship. You might also checked for specific infections with your PANDAS/PANS Dr. Mommy2MCL 1
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