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Momto3EDSAutonomiababies

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  1. I found this site a few days ago, and I happen to read your post from last year about your daughter. It made me want to sign up, so here I am. My oldest daughter has dysautonomia, POTS and now looking into EDS. It has taken six years for a name of what could be wrong.  She has so many symptoms that when I read about your daughter it hit a nerve with me, as mine as sooo many symptoms too and more pop up daily.

    1. DizzyGirls

      DizzyGirls

      So sorry to hear about your daughter.  It's tough.  You never know where all these symptoms fit.  So many doctors, and I don't mean your PCP, but specialists haven't got a clue.  I've got a ton of posts, are you referring to the vertigo or one of the other ones?  She's had chronic vertigo since she was 12-1/2.  Her sister, also.  So, it does appear to be genetic, as my mom has it, but not to the degree the girls do.  They were both diagnosed last November, actually, it's a year to the day, at Stanford's autonomic clinic.  Got a definitive diagnosis for EDS type III and POTS.  Already had a diagnosis from another neurologist for Dysautonomia.  My oldest has recently developed a condition called Erythromelalgia or Man on Fire Disease.  It's where the blood vessels in the hands and feet (primarily) dilate too much and turn red.  The sensation is as if your hands and feet were on fire.  Hers travels up her arms and legs and pretty soon her whole body feels like it's on fire, literally.  Her body is hot and we use a lot of wrapped ice pads to cool her down.  It's not under control, we've just talked with her hematologist about this and she's trying to get her some compounded creams and meds to get this calmed down.  Always something.  We just always hope we can make it through the night without having to go to the ER.  

      I've done a ton of research, so if you have any questions, please feel free to message me! 

  2. Hello. I have a 17 year old daughter who was finally diagnosed with Dysautonomia, POTS and now looking into EDS, which I know she has. As well as my other two children. It took six years to even get here. Where is that exactly?? no where. A name..thats all we have, is a name. Add more salt to her diet, if she could eat that would be great. More water, if water didn't make her IBS act up that would be swell. So many things, so many issues. Every symptom causes doctors to just nod. She doesn't look sick, she doesn't act sick...they say...they say, well sick kids don't smile..really?? how about chronic kids who have to smile through the pain to make it through their day. Yes, shes beautiful, but she is sick. From vertigo, visual snow, eye tracking issues, nauseous, head ice pick pain, body aches, muscle weakness, cold, hot, chills, tremors, trouble swallowing, trouble standing too long. SO many more. There is nothing I can do to help her..take a med they say, YES, lets take a pill that is going to give you ALL that you already have as a side effect. Lets take a blood pressure med to try to help the inflammation but you might pass out if you stand up to fast, okay sure, she already has to sit on her bed for ten minutes or more in the morning before she can get up. The list of things go on and on. I asked her, if there was one symptom that could be cured, which one would it be..VISUAL SNOW she said. if she could just see normal for once that would be great. So many doctors and specialist in a short period of time, and no answer. Neuro opthomologist says her eyes are fine..no dr can tell my WHY she has this visual snow. she said she has always had it and thought everyone did. I know that EDS can cause issues and maybe this is one of them. From a dancer all her life to barely making it to her senior year, is not what I envisioned for her life. But, she is a star player. A fighter through and through. She amazes me at her strength. I am glad I found this forum..to wright and maybe share our story. I am still on the path of finding help for her, and for my other children. I hope that maybe through this I can help another parent out there. In my small town, I have found at least three other young girls like my daughter. Six years ago, it was just us..I thought she was an enigma, as the doctors made me feel. But the last few months, I have found that she goes to school, when she can, with another POTSie and it makes her feel a little more normal. God bless these children and parents battling this head on.
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