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About jjb

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  1. Thanks for your reply. Really I am looking to gain an understanding of what is going on with my daughter's health. She already has a DX, so my questions are hows, whys and what do to. Ultimately I am trying to correct stress the body may be going through, if at all possible.
  2. One of our doctors is a big fan of Smart Water. We use it often. On the days we need more electrolyte, we use a low sugar lemonade (Trader Joes Organic PInk) mixed with mineral water and sometimes added salt (we use Real Sea Salt with minerals). If we are out and about and need something quickly, especially on those hot days, we go for vitamin water ZERO. They have added electrolytes, use stevia but they also use erythritol which I am not a big fan of. However, Vitamin Water Zero has been very effective for my daughter as an electrolyte drink on hot days and she is starting to not feel well.
  3. Sarah, Yes we have had EEG monitoring numerous times. video EEGs and ambulatory EEGs. I tend to believe all of the conditions we are dealign with are some how linked. We also see a neurogeneticist. I think what links all of the conditions is mitochondrial abnormalities. When my daughter was first diagnosed with autonomic dysfunction, the neuro recommended we look deeper into mitochondrial issues. We also deal with the migraines and tahcycardia issues. We went on something called the mito cocktail which helped tremenously. The cocktail is a very specifc cocktial of prescription supplements. My
  4. Sarah, Have you found the autonomic issues to worse/trigger your seizures? WHat treatment do you use for seizures?
  5. Hi all. I have a 10 y/o w several health conditions. She has epilepsy. ehlers danlos, stroke, probably mito and a diagnosis of autonomic neuropathy. For several years she was doing very well health wise. I credited diet and the mito cocktail. Things have worsened though over the past few months with increased dangerous seizures (status). On of the autonomic changes I have seen is that she had increased sweating under her arms last spring but has since stopped that completely and os not sweating under her arms now. Even with activities like xc ski and gymnastics. Her stamina has dropped too. It
  6. Her Neuro questioned a yeast infection. The armpit eczema has improved but is still there a little. As I mentioned both body odor and sweating seems to have stopped. This is what I am concerned with. I know anhidrosis can be dangerous. In my daughter's case , the Neuro thought she had nerve damage that caused the anhidrosis. He did not think she would be able to sweat. She eventually improved with sweating until recently. So I am wondering if there is inflammation or something somewhere. Something not only triggering worsening of anhidrosis but seizures too. Has anyone been dxd with anhidrosis
  7. HI all. I have a 10 y/o with a long list of health conditions, though thanks to help from great doctors she has been fairly healthy. She has suspected mito issues, seizures and had been diagnosed with hereditary autonomic neuropathy. One of her autonomic issues was anhidrosis. She did not sweat at all on the sweat test (but it was only the distal test). At the time, I knew she at least sweated some .... so she had/has partial anhidrosis I think. Anyway, last spring shortly after turning 10, she began sweating under arms. Quite a bit with very strong odor (I mean very strong). We started to use
  8. RE: thew ear plugs, are you rolling them in between your fingers before inserting them? RE: the cocktail, first in case you are not aware of this I thought I would mention that both dysautomia & migraines can be part of mito dysfunction. My daughter is 6 and does experience severe headaches, but we just are not sure yet if they are migraines or seizures. Also, she experiences cyclic vomiting. Right now we are leaning toward this being CVS which is probably more so migraine related. The mito cocktail has helped with this. It could be the carnitine, coq10 or one of the Bs or a combo that is
  9. Well ... I really hate to mention this but since we have experience with this, there is the possibly of simple focal seizures causing these symptoms. Here is a link: http://emedicine.medscape.com/article/1184384-overview Here are the symptoms of sensory & autonomic seizures: Jen
  10. Julie, Yes, she did have a sore throat too. I have the same virus and can say it is quite painful. DD though is not complaining nearly as much as I have been. And just wanted to mention, overall dd is doing quite well. She has been on the mito cocktail for a year now and it seems to have helped with some of her aut symptoms. AT least it has helped with what we think is cyclic vomiting. Heiferly, what you described is kind of what I was picturing. Though I am also worrying a bit of AV block. I have a hx of this and it was worsened with illness. I will be honest and say that even though many of
  11. Thanks, Put a message to pedi. Waiting to hear back.
  12. Julie, How old is your child? Also, did you mention once that elevated BP can occur with MCAD? I was actually thinking about you before I posted. I don't know of you remember, but part of dd's dysautonomia is she has elevated BP. I think I have read an elevated BP can drive down heart rate.
  13. Thanks for the replies. Her normal during sleep is between 80 and 100. I have had mine dip into the 40s as well, BUT back then my normal was 50 to 60 at rest. Also ... back then I did have a 2nd degree AV Block ... this is my concern I think. Now she DOES in fact have a cold right now so I am hoping it is from that.
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