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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. We could never do Gatorade or anything similar.
  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 daughter used to have these autonomic spells every 4 to 6 weeks for years. During sleep her heart rate would jump from 80 to 180 and oxygen would fall into the 80s, 70s and sometimes 60s. The next day she would be so fatigued and vomiting all day. We were never sure if these were seizure episodes or mirgrain varient. Either way, the supplements stopped those episodes completely. I also think the supplements helped with stamina and the sweating issues. Last spring the ins comapany stopped covering it and this I think is when things started to worsen. She had been having seizures only 2 or 3 times a year. This past month she has already had 3 to 5 (two of them being status). We are fighting the ins compnay now and trying to get the supplements back.
  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 all could be hormones or because ins stopped covering her mito sups last spring. (we are still fighting them) In any case, I think I want to connect with an autonomic specialist. I have heard mixed things about Roy Freeman. Any experience with him or should we look elsewhere? If it comes down to it, we would go to Vanderbilt. Do they do peds? I feel like in order to stop the seizures, we need to get to the bottom of the autonomic stuff.
  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 then began to sweat normally but then lost ability again?
  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 a child safe deoderant and this was helpful re odor. Her seizures had been fairly well controlled with a medical dietary treatment for several years having 2 to 3 seizures a year. This past October she had a very long seizure (multi focal) with many more symptoms than usual that would not stop with the usual emergency rescue med and we needed to call 911 (first time in 8 years). In Dec we decided to begin a new med (Onfi). My daughter also has a history of allergic type eczema (raised red rashy irritated). Also in Dec my daughter began having her eczema patch under her arms (I cannot remember if this was before or after the Onfi). We assumed it was areaction to the deoderant so we stopped the deoderant. No help so we switched to a special eczema soap. Still no help. After a few weeks of no deoderant, I realized she has abolutley no body odor and I think she has stopped sweating under her arms. Beginning Jan, she had a generalized convulsive seizure. (first one fo those in 8 years as well). We suspected that was from a possible missed dose of meds. Then a couple of weeks later had another prolonged focal seizure. And possibly a small one this past weekend. So now we are seeing a signifcant increase increase and change in seizures (both in frequency and pattern. I kind of assumed this is related to hormonal changes and we will see an increase for a while. But now I am wondering if the sweating abnormality has any signifcance here. Any thoughts on why a child would begin sweating a lot under arms, produce very stong odor, then completely stop around six months later? Is the udnerlying issue of this problem related to the seizure increase? Inflammation of a nerve (or nerves)? Thanks Jen
  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 helping with the migraines. My daughter sees a neuro who specializes in mito disorders. She wrote a script of a cocktail of vits specific to my daughters symptoms and a compounding pharm puts formulates it. Mito and pain (including migraines): http://www.mitoaction.org/blog/pain The cocktail explained: http://www.mitoaction.org/blog/mito-cocktail Mito/headache: http://www.mitoaction.org/guide/headache General overview of functional mito: http://www.curemito.org/ Migraine/mito article: http://headacheandmigrainenews.com/fight-migraine-be-nice-to-your-mitochondria/ Jen
  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 us have these quirks w/ changes in BP & HR, in my daughters case I worry about something called SUDEP since in addition to aut quirks she has aut seizures... specifically I worry about the perfect autonomic storm leading to SUDEP. Anyway, tomorrow will call ped cardiologist and will probably do a Holter. J
  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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