Autonomic Cardio

My son has cardiac issues from his autonomic dysfunction too. For him basically it means that he's tachy if he's up. It's called POTS or postural orthostatic tachycardia syndrome. Some people treat it with sodium I think, sometimes people really respond well to it, but other times other issues complicate it. My son also has cardiac conduction problems, so it makes it harder to treat than if it was just POTS. I would be very interested in hearing what they say there, so will you keep us updated? thanks and good luck! Courey

Hi Courey,

Thanks for the info.  Teddy has Complex III and MELAS, so I think we have a lot in common.  Our appointmet at TUFTs isn't until 12/18, but I will post any findings as soon as I can,  Do you see the drs at TUFTs too?

Hi Stephanie Please read the article in our forum entitled "Pots defined" it is listed under the Recent comments on the right, this should give you some great information about POTS. Hope it helps. Kayjay

no, we see cardio at vanderbilt children's hospital and for Mito we see dr K in Houston. Where is TUFTs?

HI Kayjay!

I did read the article.  Very helpful!  I am so worried, because Teddy also has a heart defect, a PFO.  Dr Korson's group think the PFO should be corrected, and the drs here in Mpls, are of the thought that they should leave it alone.  Now, we add this POTS to the mix, and I don't know what to think.  Teddy fell asleep in school today, sound asleep.

Hi Stephanie, Our daughter used to fall asleep in school all the time. She was diagnosed after a 9 year journey from the time she was 9 months old of ruling out everything under the sun, until finally we were diagnosed with Mito and as you, we travelled many roads of uncertainty while all these odd and at times what seemed to be unexplainable symptoms would occur. Fortunately, her metabolic geneticist, cardiac surgeon, and her cardiac geneticist we were able to medicate her with florinef, and midodrine and salt tabs as a means to regulate her pressures (POTS), and prevent her from fainting episodes, rapid heart rates, and falling asleep mid play or mid study, or at times even when she was walking, or eating. ANS issues can be managed, it is rocky at times, but when you do find that medicinal mix that works it is great. She is now a freshman in High School, and for the time being her ANS issues are stable. One day a time friend, one day at a time. This past fall her body decided that her pressures needed more medicinal help so we had to "tweek" her medications again, and fortunately we were successful. I have also often been in the position of opposing medical opinions as it pertains to treatment and interventions for both my children who have mito, and inevitably I literally make a pro's and con's list, hear everyone out and than get a third opinion if necessary. As a mito mom, I often follow my gut instinct and so far so good! LOL! Not to say we have always made the right choice, but truly listen to all your child's physicians and their reasonings. I often end my appointment if I am confused by saying, "Ok, if this were your child what would you do?" Hope this helps and that Teddy's recent health issues resolve sooner than later...be well, Kayjay!

Hi Courey,

Tufts Floating Hospital for children is located in New England Medical Center, in Boston.  :)  

  Be well, Kayjay

HI Kayjay,

Thanks for the great advice.  Did your daughter have to have heart surgery?  You mentioned a cardiac surgeon.  ALso, who do you see for mito?

 

Stephanie

Hi Stephanie, Both my children are followed by Mark Korson's office as well for mito management, and two different cardiac specialists as she has three cardiac issues, and is a candidate for surgery at some point but so far we haven't had to go there. Have a good one! Kayjay