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Everything posted by jjb

  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.
  14. I would become familiar with all of what Sugartwin posted. Here is one link (with translations) on hypermobility & chiari http://www.chiariconnectioninternational.com/Hereditary_disorders%20_connective%20tissue.php Also .... it is VERY important to be sure your doc has the right DX for your hypermobility as some types are more serious than others. Here is a link to an overview of EDS: http://emedicine.medscape.com/article/1114004-overview J
  15. Hi all. I have a 6 year old with dysautnomia. Specifically neuro thinks it is hereditary aut neuropathy. She also likely has EDS, has hemiplegia from stroke & autonomic seizures and/or migraines. Has mild apnea (osa & csa) She is hooked up to an oximeter at night. The past three nights her HR has dropped into the 50s but o2 is fine. Normal resting HR for this age range is 70 to 100. Typically she has a greater tendency toward tachycardia ... not brady. I am hoping it is just a bad sensor and will try a new one tonight. If this happens again with the new sensor, will call pedi of cours
  16. These are excellent! I use them too when I hike or doing more than the usual in terms of physical activity. I used to bring sugar and salt packets with me when I hike, but I find these work better. I have only found the Margarita flavor that has the extra sodium, but these taste quite good. I think that they help to keep me hydrated some too which is good as I cannot stomach drinking too much water. You can find these at many sporting good stores such as EMS, REI, Maybe Dicks etc. or online. Jen
  17. Yes, this happens to me too. It also occurs sometimes when I reach upward for something. With Ava though ... I cannot figure out an exact trigger such as standing or reaching up above head but she sort of looks or behaves similarly to when I am feeling pre syncope. Another thing she will commonly do is get down on the floor face down in a ball. I used to this too when I had frequent pre-syncope.
  18. Thanks for continuing to bring this up Julie. We do have eventually look into it. It is difficult sometimes to keep things staright in my mind when we have been looking into so mnay possiblities and DXs are stacking. I am 100% certain it is all related .... just forever trying to figure out how. We recently saw a mito specialist who believes it is quite possible we have mito dysfunction here. Julie, since you have so many health issues as I do (and Ava) I am curious as to if you have ever looked into mito? And here are so more questions re: MCAD (sorry if I have asked them before) 1. Ava (and
  19. Thanks for your replies. The breathing was similar to someone who is experiencing sudden anxiety, but she did not seem anxious. I have had this too during episodes ... but as you mentioned it is more so for me when I walk up stairs and so forth. Unless my BP is falling, then I also feel the breathing thing but for me that is an ortho issue. Ava will suddenly feel nauseous and dizzy ... and just today started having the breathing thing. Actually she just had another episode as I was typing this. She was pretty tachy setting her alarm off .... but not ortho tachy. Her o2 was actually at 100% whe
  20. Hi all. Ava is having some of her autonomic symptoms today (which may be migraine or autonomic sz). Today she has said she feels sick and is breathing as if she is trying to catch her breath and then lays down to sleep. She is fully aware ... no loss of alertness. Anyone else experience this?
  21. Julie, yes a lot come up but none are really about the two conditions or whether or not mito is effected in EDS. And of couse those are only the articles I was able to wade through as many of those articles on GS requires payment. :/
  22. We saw Dr Sims. So far just had blood work done.
  23. They now know there are various migraine types. Not all migraines are debilitating. We actually just saw a mito specialists last week and talked a great deal abut mirgraines. She thinks Ava's monthly episodes of nausea, vomiting and fatigue are actually migraines Here is a good article that will show just how different (and unusual) migrraines can be. http://emedicine.medscape.com/article/1142731-overview
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