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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. 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.
  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 course and see what she thinks. Does anyone else have any children or your self have issues with bradycardia when typically your problem is more tachy? J
  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 myself) are prone to quirky rashes, but typically during Ava's episodes/spells there is no rash ... does this happen w/ MCAD? 2. Is your intersticial cystitis caused by MCAD? (I know when I had a bladder biopsy, beside showing chroninc scarring there was also an elevation of mast cells. 3. Does MCAD ever cycle & cluster? Ava's episodes occur in clusters every 3 to 4 weeks. Thanks, Jen
  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% when she was doing the breathing thing ... but she desatted once she seemed to feel better.
  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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